TSC Alert
TSC Alliance Partners with NeurologyLive™
The TSC Alliance has partnered with NeurologyLive to bring healthcare professionals treating neurological disorders the latest in research and practice. You can view our partner page here. Subscribe to NeurologyLive to stay up to date on clinical trial
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Although COVID-19 is delaying many aspects of academic research, the TSC Alliance can help you prepare to launch your research forward as soon as this public health crisis has passed.
TSC Alert
Update on TSC Biosample Repository Project
The TSC Alliance has resumed biosample collection and is able to consent patients for the project via a 20-minute phone call. In coordination with a national mobile phlebotomy service the TSC
TSC Alert
Research Study on TSC and COVID-19
The TSC Alliance is collecting clinical information about individuals with TSC who had COVID-19 infection. Please circulate to your patients: The TSC Alliance is collecting clinical information in their TSC
TSC Alert
COVID-19 Considerations for TSC Medical Professionals
Because current data do not provide clear answers for many TSC patients’ questions, drawing on opinions from key leaders in TSC clinical care, the TSC Alliance’s Science and Medical Committee,
TSC Matters Post
Quality of Life Study – Checklist for adults with TSC (CHAT-TSC)
Are you an adult with TSC or a parent/caregiver of a dependent adult with TSC? Agnies van Eeghen, MD, PhD at Erasmus Medical Centre in Rotterdam, the Netherlands and her
TSC Matters Post
Behavioral Research – Open to families with children with and without TSC
Tell us about your child’s emotional outbursts
Resource
Episode 13: TSC Global Awareness Month in the Age of COVID-19
In episode 13 of TSC Now, host Dan Klein celebrates TSC Awareness Month and one full year of podcasting by once again reaching out to some of the Tuberous Sclerosis
TSC Alert
TSC Alliance Partners with NeurologyLive™
The TSC Alliance has partnered with NeurologyLive to bring healthcare professionals treating neurological disorders the latest in research and practice. You can view our partner page here. Subscribe to NeurologyLive to stay up-to-date on clinical trial news,
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Although COVID-19 is delaying many aspects of academic research, the TSC Alliance can help you prepare to launch your research forward as soon as this public health crisis has passed.
TSC Alert
Update on TSC Biosample Repository Project
Currently, biosample collections have been paused. However, patients with TSC can still participate in this initiative. The TSC Alliance is able to consent patients for the project via a 20-minute
TSC Alert
Research Study on TSC and COVID-19
The TSC Alliance is collecting clinical information about individuals with TSC who had COVID-19 infection. Please circulate to your patients: The TSC Alliance is collecting clinical information in their TSC
TSC Alert
COVID-19 Considerations for TSC Medical Professionals
Because current data do not provide clear answers for many TSC patients’ questions, drawing on opinions from key leaders in TSC clinical care, the TSC Alliance’s Science and Medical Committee
TSC Alert
Thank You TSC Nurses!
Resource
Episode 12: Living with TSC During COVID-19
In episode 12 of TSC Now, host Dan Klein does a deep dive on the ongoing COVID-19 crisis and its impact on the tuberous sclerosis complex (TSC) community. Throughout the
TSC Matters Post
Behavioral Research – Open to families with children with and without TSC
Tell us about your child’s emotional outbursts
TSC Matters Post
Phenotypic Variability in Tuberous Sclerosis Complex (TSC)
Dr. Narayanan and colleagues at the Translational Genomics Research Institute (TGen) in Phoenix, Arizona are conducting a research study aimed at identifying genetic modifiers of disease severity in TSC.
TSC Matters Post
Listen and Subscribe to TSC Now
TSC Now is the TSC Alliance’s podcast series, which features interviews with clinicians, researchers, TSC Alliance staff and others on topics like TSC research, epilepsy surgery options, educational advocacy, TSC-associated Neuropsychiatric Disorders (TAND),
TSC Matters Post
#March4TSCresearch Update
The annual TSC Alliance March on Capitol Hill to advocate for federal funding for the Tuberous Sclerosis Complex Research Program (TSCRP) at the Department of Defense’s (DoD) Congressionally Directed Medical
TSC Matters Post
Moving TSC Research Forward in the Face of COVID-19
On Monday, April 6, TSC Alliance staff members from our science department presented on how we are continuing to advance critical TSC research during the COVID-19 pandemic.
TSC Matters Post
TSC Clinic Experience of Care Survey
The TSC Alliance would like to know about your experience at the TSC Clinic you/your child go to for care. Your comments in this online survey will be shared with the TSC
TSC Matters Post
Update on TSC Biosample Repository and Natural History Database Project
Although collections are paused due to COVID-19 concerns, the TSC Alliance is able to complete the consent process with you remotely now and complete collections later this year. For more
TSC Matters Post
TSC Alliance COVID-19 & TSC Resource
The TSC Alliance has assembled a wide range of information and resources about the COVID-19 pandemic for people with TSC, their families and loved ones, and medical professionals. These include
TSC Alert
Contribute to a Study About Standard Neurological Care in TSC Children
Information about the Warsaw Medical University study: Tuberous sclerosis complex (TSC) is a disease with a very high risk of epilepsy and its comorbidities, such as intellectual disability and autistic
TSC Alert
TSC Alliance Partners with NeurologyLive™
The TSC Alliance has partnered with NeurologyLive to bring healthcare professionals treating neurological disorders the latest in research and practice. You can view our partner page here. Subscribe to NeurologyLive to stay up-to-date on clinical trial news, FDA
TSC Alert
Register Your Interest for the 2020 International TSC Research Conference
The International Tuberous Sclerosis Complex Research Conference 2020: A Vision for the Future will take place November 12-14, 2020 at the Royal College of Physicians in London, UK. The conference will be organized
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Although COVID-19 is delaying many aspects of academic research, the TSC Alliance can help you prepare to launch your research forward as soon as this public health crisis has passed.
TSC Alert
COVID-19 Considerations for TSC Medical Professionals
Because current data do not provide clear answers for many TSC patients’ questions, drawing on opinions from key leaders in TSC clinical care, the TSC Alliance’s Science and Medical Committee
TSC Alert
Moving TSC Research Forward in the Face of COVID-19
TSC Alliance staff members from our science department share how we are continuing to move TSC research forward during the COVID-19 pandemic.
Resource
Episode 11: A #March4TSCresearch Recap & Update on COVID-19
In episode 11 of TSC Now, host Dan Klein recaps our annual March on Capitol Hill, which took place on March 4, 2020 in Washington, DC and brought together more
TSC Alert
Contribute to a Study About Standard Neurological Care in TSC Children
Information about the Warsaw Medical University study: Tuberous sclerosis complex (TSC) is a disease with a very high risk of epilepsy and its comorbidities, such as intellectual disability and autistic
TSC Alert
TSC Alliance Partners with NeurologyLive™
The TSC Alliance has partnered with NeurologyLive to bring healthcare professionals treating neurological disorders the latest in research and practice. You can view our partner page here. Subscribe to NeurologyLive to stay up-to-date on clinical trial news, FDA
TSC Alert
Register Your Interest for the 2020 International TSC Research Conference
The International Tuberous Sclerosis Complex Research Conference 2020: A Vision for the Future will take place November 12-14, 2020 at the Royal College of Physicians in London, UK. The conference will be
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Are you looking for samples from TSC patients to use in your lab? The TSC Biosample Repository has a growing collection of samples tied to phenotypic data. In most cases,
TSC Alert
COVID-19 Considerations for TSC Medical Professionals
Because current data do not provide clear answers for many TSC patients’ questions, drawing on opinions from key leaders in TSC clinical care, the TSC Alliance’s Science and Medical Committee
TSC Matters Post
Phenotypic Variability in Tuberous Sclerosis Complex (TSC)
Dr. Narayanan and colleagues at the Translational Genomics Research Institute (TGen) in Phoenix, Arizona are conducting a research study aimed at identifying genetic modifiers of disease severity in TSC.
TSC Matters Post
Listen and Subscribe to TSC Now
TSC Now is the TSC Alliance’s podcast series, which features interviews with clinicians, researchers, TSC Alliance staff and others on topics like TSC research, epilepsy surgery options, educational advocacy, TSC-associated Neuropsychiatric Disorders (TAND),
TSC Matters Post
#March4TSCresearch Update
On March 4, 2020 more than 120 volunteer advocates from across the country will gather in Washington, DC for the annual March on Capitol Hill to advocate for continued funding
TSC Matters Post
Seeking Volunteers for the TSC Biosample Repository
To learn more about donating to the TSC Biosample Repository click here or contact Jo Anne Nakagawa at jnakagawa@tscalliance.org or (240) 648-4654.
TSC Matters Post
TSC Clinic Experience of Care Survey
The TSC Alliance would like to know about your experience at the TSC Clinic you/your child go to for care. Your comments in this online survey will be shared with the TSC
TSC Matters Post
TSC Alliance Announces New Improving Partnerships and Lives Grant
The TSC Alliance Improving Partnerships and Improving Lives Grant (IPaLG) is designed to develop new partnerships and provide much-needed resources to families/individuals living with TSC. Funding decisions are made through
TSC Alert
TSC Alliance Partners with NeurologyLive™
The TSC Alliance has partnered with NeurologyLive to bring healthcare professionals treating neurological disorders the latest in research and practice. You can view our partner page here. Subscribe to NeurologyLive to stay up-to-date on clinical trial news, FDA
TSC Alert
Contribute to a Study About Standard Neurological Care in TSC Children
Information about the Warsaw Medical University study: Tuberous sclerosis complex (TSC) is a disease with a very high risk of epilepsy and its comorbidities, such as intellectual disability and autistic
TSC Alert
Register Your Interest for the 2020 International TSC Research Conference
The International Tuberous Sclerosis Complex Research Conference 2020: A Vision for the Future will take place November 12-14, 2020 at the Royal College of Physicians in London, UK. The conference will be
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Are you looking for samples from TSC patients to use in your lab? The TSC Biosample Repository has a growing collection of samples tied to phenotypic data. In most cases,
TSC Alert
Save the Date for the 2020 International TSC Research Conference
The International Tuberous Sclerosis Complex Research Conference 2020: A Vision for the Future will take place November 12-14, 2020 at the Royal College of Physicians in London, UK. The conference will be organized
TSC Alert
Contribute to a Study About Standard Neurological Care in TSC Children
Information about the Warsaw Medical University study: Tuberous sclerosis complex (TSC) is a disease with a very high risk of epilepsy and its comorbidities, such as intellectual disability and autistic
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Are you looking for samples from TSC patients to use in your lab? The TSC Biosample Repository has a growing collection of samples tied to phenotypic data. In most cases,
TSC Matters Post
Are you an Adult with TSC or a Caregiver of an Adult with TSC?
Dr. Agnies Van Eeghen and her research team at Erasmus Medical Centre in The Netherlands are conducting a research study to develop a questionnaire to investigate the burden and restrictions
TSC Matters Post
Phenotypic Variability in Tuberous Sclerosis Complex (TSC)
Dr. Narayanan and colleagues at the Translational Genomics Research Institute (TGen) in Phoenix, Arizona are conducting a research study aimed at identifying genetic modifiers of disease severity in TSC. For
TSC Matters Post
Dr. David Kwiatkowski at the Brigham & Women’s Hospital in Boston Seeks Biospecimens for LAM/TSC Research
His research involves analyzing left over fluid and tissue samples from chest and abdominal drains and surgery. After the fluid or tissue is removed and processed by your hospital, he
TSC Matters Post
Dose-Ranging Efficacy and Safety Study of Topical Rapamycin Cream for Facial Angiofibroma Associated with Tuberous Sclerosis Complex (TSC)
A new clinical trial for individuals with TSC and facial angiofibromas who are 6 – 65 years old. Individuals who have used oral rapamycin/sirolimus, everolimus, or temsirolimus within 3 months
TSC Matters Post
Clinical Trial for Individuals Diagnosed with Tuberous Sclerosis Complex (TSC) and Cutaneous Angiofibromas
We are currently conducting a clinical trial for individuals diagnosed with TSC with facial bumps called cutaneous angiofibromas. The goal of this study is to investigate if the study drug,
TSC Matters Post
We are Seeking Volunteers for the TSC Biosample Repository
The purpose of this research project is to collect a sample of blood, tissue, fluid or other types of bodily samples from children and adults with tuberous sclerosis complex (TSC).
TSC Matters Post
Join Us for a Free Webinar on TSC-Associated Neuropsychiatric Disorders (TAND)
TAND Webinar: Effective Behavioral Treatments Presented by Dr. Nathan Call
TSC Matters Post
TSC Clinic Experience of Care Survey
The TSC Alliance would like to know about your experience at the TSC Clinic you/your child go to for care. Your comments in this online survey will be shared with the TSC
TSC Matters Post
Listen and Subscribe to TSC Now
TSC Now is the TSC Alliance’s podcast series, which features interviews with clinicians, researchers, TSC Alliance staff and others on topics like TSC research, epilepsy surgery options, educational advocacy, TSC-associated Neuropsychiatric Disorders (TAND),
TSC Matters Post
Changes to TSC Matters in 2020
The TSC Alliance is transitioning to a new email platform in 2020. Be on the lookout for an email early in January asking you to update your information and resubscribe
TSC Alert
Important Update about TSC Alert in 2020
Starting in January, the TSC Alert e-newsletter will be sent out on the second Friday of the month. Furthermore, the TSC Alliance is transitioning to a new email platform in
TSC Alert
Save the Date for the 2020 International TSC Research Conference
The International Tuberous Sclerosis Complex Research Conference 2020: A Vision for the Future will take place November 12-14, 2020 at the Royal College of Physicians in London, UK. The conference will be organized
TSC Alert
Contribute to a Study About Standard Neurological Care in TSC Children
Information about the Warsaw Medical University study: Tuberous sclerosis complex (TSC) is a disease with a very high risk of epilepsy and its comorbidities, such as intellectual disability and autistic
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Are you looking for samples from TSC patients to use in your lab? The TSC Biosample Repository has a growing collection of samples tied to phenotypic data. In most cases,
TSC Alert
New Research Article Available on the TOSCA Registry for TSC
The TuberOus SClerosis registry to increase disease Awareness (TOSCA) is an international disease registry designed to provide insights into the clinical characteristics of patients with Tuberous Sclerosis Complex (TSC). The
TSC Alert
Connect with the TSC Alliance at AES
There are several opportunities to meet with TSC Alliance representatives during the 2019 American Epilepsy Society Annual Meeting:
TSC Alert
Save the Date for the 2020 International TSC Research Conference
The International Tuberous Sclerosis Complex Research Conference 2020: A Vision for the Future will take place November 12-14, 2020 at the Royal College of Physicians in London, UK. The conference will be organized
TSC Alert
Contribute to a Study About Standard Neurological Care in TSC Children
Information about the Warsaw Medical University study: Tuberous sclerosis complex (TSC) is a disease with a very high risk of epilepsy and its comorbidities, such as intellectual disability and autistic
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Are you looking for samples from TSC patients to use in your lab? The TSC Biosample Repository has a growing collection of samples tied to phenotypic data. In most cases,
TSC Alert
Join Us at the TSC Alliance and TSC Center of Maryland AES Reception
Friday, December 6, 2019 7 to 9 pm Health Sciences Research Facility III – Atrium 670 West Baltimore Street Baltimore, MD 21201
TSC Matters Post
Meet Team TSC
On Sunday, November 3, 2019, 11 members of Team TSC will be running in the 2019 TCS New York City Marathon on behalf of the TSC Alliance. To date, our Team TSC
TSC Matters Post
Are you an adult with TSC or a caregiver of an adult with TSC?
Dr. Agnies Van Eeghen and her research team at Erasmus Medical Centre in The Netherlands are conducting a research study to develop a questionnaire to investigate the burden and restrictions
TSC Matters Post
Dr. David Kwiatkowski at the Brigham & Women’s Hospital in Boston Seeks Biospecimens for LAM/TSC Research
His research involves analyzing left over fluid and tissue samples from chest and abdominal drains and surgery. After the fluid or tissue is removed and processed by your hospital, he
TSC Matters Post
Dose-Ranging Efficacy and Safety Study of Topical Rapamycin Cream for Facial Angiofibroma Associated with Tuberous Sclerosis Complex (TSC
A new clinical trial for individuals with TSC and facial angiofibromas who are 6 – 65 years old. Individuals who have used oral rapamycin/sirolimus, everolimus, or temsirolimus within 3 months
TSC Matters Post
TSC Clinic Experience of Care Survey
The TSC Alliance would like to know about your experience at the TSC Clinic you/your child go to for care. Your comments in this online survey will be shared with the TSC
TSC Matters Post
Phenotypic Variability in Tuberous Sclerosis Complex (TSC)
Dr. Narayanan and colleagues at the Translational Genomics Research Institute (TGen) in Phoenix, Arizona are conducting a research study aimed at identifying genetic modifiers of disease severity in TSC. For
TSC Matters Post
Clinical Trial for Individuals Diagnosed with Tuberous Sclerosis Complex (TSC) and Cutaneous Angiofibromas
We are currently conducting a clinical trial for individuals diagnosed with TSC with facial bumps called cutaneous angiofibromas. The goal of this study is to investigate if the study drug,
TSC Matters Post
TSC Alliance Announces New TSC Centers of Excellence
The TSC Alliance is pleased to introduce our new “TSC Center of Excellence” designation for qualifying TSC Clinics. Each TSC Center of Excellence must submit an application specifying how it
TSC Matters Post
Join Us at the Regional TSC & LAM Conference in Los Angeles!
The fifth and final Regional TSC and LAM Conference, co-hosted with The LAM Foundation, is Saturday, November 2 starting at 8:30 AM at the UCLA Meyer & Renee Luskin Conference
TSC Matters Post
Upcoming Step Forward to Cure TSC Walks
Sometimes simple things can make a huge difference. Like simple steps, taken by caring people on a mission to improve the lives of those living with tuberous sclerosis complex (TSC).
TSC Matters Post
TSC Research: Our Vision for 2020
As part of our 45th Anniversary Celebration, during the Fund a Cure portion of the live auction we raised funds to support two important research initiatives that we believe will
TSC Matters Post
Subscribe to TSC Now
TSC Now is the TSC Alliance’s podcast series, which features interviews with clinicians, researchers, TSC Alliance staff and others on topics like TSC research, epilepsy surgery options, educational advocacy, TSC-associated Neuropsychiatric Disorders (TAND),
TSC Matters Post
What TSC Means to Me Drawing Contest
In September, the TSC Alliance of Indiana held a “What Tuberous Sclerosis Complex (TSC) Means to Me” Drawing Contest for family members, caregivers, friends, and individuals with TSC. Contestants were asked
Resource
Episode 6: TSC-Associated Neuropsychiatric Disorders (TAND)
In episode 6 of TSCnow, host Dan Klein talks to Petrus de Vries, MBChB, MRCPsych, PhD, Sue Struengmann Professor of Child and Adolescent Psychiatry at the University of Capetown in
TSC Alert
Save the Date for the 2020 International TSC Research Conference
The International Tuberous Sclerosis Complex Research Conference 2020: A Vision for the Future will take place November 12-14, 2020 at the Royal College of Physicians in London, UK. The conference will be organized
TSC Alert
Contribute to a Study About Standard Neurological Care in TSC Children
Information about the Warsaw Medical University study: Tuberous sclerosis complex (TSC) is a disease with a very high risk of epilepsy and its comorbidities, such as intellectual disability and autistic
TSC Alert
TSC Biosamples Available at No Cost to Researchers
re you looking for samples from TSC patients to use in your lab? The TSC Biosample Repository has a growing collection of samples tied to phenotypic data. In most cases,
TSC Alert
Last Call: Funding Opportunity Announcement: Seed Grants to Utilize TSC Biosamples
Again in 2019, the TSC Alliance is announcing a funding opportunity for Biosample Seed Grants to support research using blood, tissue, and buccal cells from the TSC Biosample Repository. The
Resource
Episode 5: TSC Kidney Manifestations & Consensus Guidelines for Surveillance and Treatment
In episode 5 of TSC Now, Dan Klein talks to Dr. John Bissler, MD, Clinic Director of the Tuberous Sclerosis Complex Center of Excellence located at Le Bonheur Children’s Hospital,
TSC Alert
Funding Opportunity Announcement: Seed Grants to Utilize TSC Biosamples
Again in 2019, the TSC Alliance is announcing a funding opportunity for Biosample Seed Grants to support research using blood, tissue, and buccal cells from the TSC Biosample Repository. The
TSC Alert
Save the Date for the 2020 International TSC Research Conference
The International Tuberous Sclerosis Complex Research Conference 2020: A Vision for the Future will take place November 12-14, 2020 at the Royal College of Physicians in London, UK. The conference will be organized
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Are you looking for samples from TSC patients to use in your lab? The TSC Biosample Repository has a growing collection of samples tied to phenotypic data. In most cases,
TSC Alert
Contribute to a Study About Standard Neurological Care in TSC Children
Information about the Warsaw Medical University study: Tuberous sclerosis complex (TSC) is a disease with a very high risk of epilepsy and its comorbidities, such as intellectual disability and autistic
Resource
Episode 4: Educational Issues in TSC and How to Advocate for Your Child in School
In the fourth episode of TSC Now, host Dan Klein talks to Lilian Ansari, MS, Special Needs Advocate, Co-Chair of the TS Alliance of Northern California and Education Parent Mentor. They
TSC Matters Post
2019 International TSC Research Conference Review
The 2019 International TSC Research Conference: Changing the Course of TSC, co-sponsored with Tuberous Sclerosis Canada Sclérose Tubéreuse (TSCST) and the TSC Alliance of Mexico, was held June 20-22, 2019 in Toronto, Canada. The conference brought together 251 people from
TSC Matters Post
Join the TSC Alliance at Our 45th Anniversary Gala in New York City
Early bird tickets available until September 9, 2019. Learn More Get Your Tickets Now
TSC Matters Post
Join Us at the Regional TSC & LAM Conference in Chicago!
The third Regional TSC and LAM Conference, co-hosted with The LAM Foundation, is Saturday, September 7 starting at 8:30 AM at the Healtyh Science Campus at Loyola University in Chicago,
TSC Matters Post
TSC Clinic Experience of Care Survey
The TSC Alliance would like to know about your experience at the TSC Clinic you/your child go to for care. Your comments in this online survey will be shared with the TSC
TSC Matters Post
Listen to TSC Now
TSC Now is the TSC Alliance’s podcast series, which features interviews with clinicians, researchers, TSC Alliance staff and others on topics like TSC research, epilepsy surgery options, educational advocacy, TSC-associated Neuropsychiatric Disorders (TAND),
TSC Matters Post
Join Team TSC and Run the NYC Marathon!
There are still a few spots left to run with Team TSC in the 2019 TCS New York City Marathon on November 3, 2019. Learn More. Sign Up to Run with
TSC Matters Post
Upcoming Step Forward to Cure TSC Walks
Sometimes simple things can make a huge difference. Like simple steps, taken by caring people on a mission to improve the lives of those living with tuberous sclerosis complex (TSC).
TSC Matters Post
Phenotypic Variability in Tuberous Sclerosis Complex (TSC)
Dr. Narayanan and colleagues at the Translational Genomics Research Institute (TGen) in Phoenix, Arizona are conducting a research study aimed at identifying genetic modifiers of disease severity in TSC. For
TSC Matters Post
Dose-Ranging Efficacy and Safety Study of Topical Rapamycin Cream for Facial Angiofibroma Associated with Tuberous Sclerosis Complex (TSC)
A new clinical trial for individuals with TSC and facial angiofibromas who are 6 – 65 years old. Individuals who have used oral rapamycin/sirolimus, everolimus, or temsirolimus within 3 months
TSC Matters Post
Clinical Trial for Individuals Diagnosed with Tuberous Sclerosis Complex (TSC) and Cutaneous Angiofibromas
We are currently conducting a clinical trial for individuals diagnosed with TSC with facial bumps called cutaneous angiofibromas. The goal of this study is to investigate if the study drug,
TSC Alert
Save the Date for the 2020 International TSC Research Conference
The International Tuberous Sclerosis Complex Research Conference 2020: A Vision for the Future will take place November 12-14, 2020 at the Royal College of Physicians in London, UK. The conference will be organized
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Are you looking for samples from TSC patients to use in your lab? The TSC Biosample Repository has a growing collection of samples tied to phenotypic data. In most cases,
TSC Alert
2019 International TSC Research Conference Review
Thank you to everyone who attended the 2019 International TSC Research Conference: Changing the Course of TSC in Toronto. You can view the Conference Program Book here. The conference, co-sponsored with Tuberous Sclerosis Canada Sclérose
TSC Alert
Contribute to a Study About Standard Neurological Care in TSC Children
Information about the Warsaw Medical University study: Tuberous sclerosis complex (TSC) is a disease with a very high risk of epilepsy and its comorbidities, such as intellectual disability and autistic
Resource
Episode 3: The 2019 International TSC Research Conference
In the third episode of TSC Now, host Dan Klein, Director of Digital Platforms for the Tuberous Sclerosis Alliance, talks to the two co-chairs of the 2019 International TSC Research Conference: Changing
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Are you looking for samples from TSC patients to use in your lab? The TSC Biosample Repository has a growing collection of samples that are tied to phenotypic data. In
TSC Alert
2019 International TSC Research Conference Post Survey
Thank you to everyone who attended the 2019 International TSC Research Conference: Changing the Course of TSC in Toronto. You can view the Conference Program Book here. If you attended the conference please
TSC Alert
Save the Date for the 2020 International TSC Research Conference
The International Tuberous Sclerosis Complex Research Conference 2020: A Vision for the Future will take place November 12-14, 2020 at the Royal College of Physicians in London, UK. The conference
Resource
Episode 2: Epilepsy in TSC and Laser Ablation Surgery with Dr. Daniel Curry
In the second episode of TSC Now host Dan Klein talks to Dr. Daniel Curry, Director of Functional Neurosurgery and Epilepsy Surgery at Texas Children’s Hospital in Houston. They discuss
TSC Matters Post
TSC Clinic Experience of Care Survey
The TSC Alliance would like to know about your experience at the TSC Clinic you/your child go to for care. Your comments in this online survey will be shared with the TSC
TSC Matters Post
Phenotypic Variability in Tuberous Sclerosis Complex (TSC)
Dr. Narayanan and colleagues at the Translational Genomics Research Institute (TGen) in Phoenix, Arizona are conducting a research study aimed at identifying genetic modifiers of disease severity in TSC. For
TSC Matters Post
Dr. David Kwiatkowski at the Brigham & Women’s Hospital in Boston Seeks Biospecimens for LAM/TSC Research
His research involves analyzing left over fluid and tissue samples from chest and abdominal drains and surgery. After the fluid or tissue is removed and processed by your hospital, he
TSC Matters Post
Clinical Trial for individuals diagnosed with Tuberous Sclerosis Complex (TSC) and cutaneous angiofibromas
We are currently conducting a clinical trial for individuals diagnosed with TSC with facial bumps called cutaneous angiofibromas. The goal of this study is to investigate if the study drug,
TSC Matters Post
TSC Clinical Research Consortium Update
To initiate and implement clinical studies more quickly and effectively, researchers from five TSC Clinics together with the TSC Alliance formed the TSC Clinical Research Consortium in 2012. Since then,
TSC Matters Post
Join Team TSC and Run the NYC Marathon!
Team TSC is a dedicated group of people running on behalf of the 50,000 people in the US and 1 million worldwide with tuberous sclerosis complex (TSC). The TSC Alliance
TSC Matters Post
2019 Global TSC Awareness Day Celebration Held at Foothill Oaks Elementary School in Sacramento, CA
Jessica Hilderbrand, Resource Specialist, held an event to celebrate one of her students who has TSC. More than 200 students in grades 3 to 6 watched the Turbo & Scott
TSC Matters Post
#March4TSCresearch Update
We are excited to report over a third of the Senate signed the FY20 Dear Colleague Letter, and it closed with a record 35 signatures! The previous high was 29.
TSC Matters Post
Subscribe to TSC Now
TSC Now is the TSC Alliance’s podcast series, which features interviews with clinicians, researchers, TSC Alliance staff and others on topics like TSC research, epilepsy surgery options, educational advocacy, TSC-associated Neuropsychiatric Disorders
TSC Matters Post
Upcoming Step Forward to Cure TSC Walks
Sometimes simple things can make a huge difference. Like simple steps, taken by caring people on a mission to improve the lives of those living with tuberous sclerosis complex (TSC).
TSC Matters Post
St. Louis Regional TSC & LAM Conference
The TSC Alliance and The LAM Foundation are co-hosting four more Regional TSC & LAM Conferences in 2019! Focusing on patients and caregivers, conferences will take place in St. Louis (June 15), Chicago (September 7), Atlanta (September 21), and Los
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Are you looking for samples from TSC patients to use in your lab? The TSC Biosample Repository has a growing collection of samples that are tied to phenotypic data. In
TSC Alert
Last Chance: Register Today for the 2019 International TSC Research Conference
Register now for the 2019 International Tuberous Sclerosis Complex Research Conference: Changing the Course of TSC. We look forward to seeing you June 20-22 at the Chelsea Hotel Toronto! The
Resource
Episode 1: TSC Global Day, 45th Anniversary and the Future of TSC Research
Welcome to the debut episode of TSC Now, a podcast from the Tuberous Sclerosis Alliance! In this episode Dan Klein, Director of Digital Platforms, talked to Jennifer Flinn from TS
TSC Alert
April TSC Preclinical Consortium Meeting
On April 1 members of the Tuberous Sclerosis Complex (TSC) Preclinical Consortium met in Silver Spring, Maryland to discuss ongoing preclinical projects and set priorities for the rest of the year.
TSC Alert
Register Today for the 2019 International TSC Research Conference
Register now for the 2019 International Tuberous Sclerosis Complex Research Conference: Changing the Course of TSC. We look forward to seeing you June 20-22 at the Chelsea Hotel Toronto! The
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Are you looking for samples from TSC patients to use in your lab? The TSC Biosample Repository has a growing collection of samples that are tied to phenotypic data. In
TSC Alert
Save the Date: 2020 International TSC Research Conference Announced
The 2020 International Tuberous Sclerosis Complex Research Conference will take place at the Royal College of Physicians in London, UK November 12-14, 2020.
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Are you looking for samples from TSC patients to use in your lab? The TSC Biosample Repository has a growing collection of samples that are tied to phenotypic data. In
TSC Alert
Register Today for the 2019 International TSC Research Conference
Register now for the 2019 International Tuberous Sclerosis Complex Research Conference: Changing the Course of TSC. We look forward to seeing you June 20-22 at the Chelsea Hotel Toronto! The 2019
TSC Alert
Save the Date: 2020 International TSC Research Conference Announced
The 2020 International Tuberous Sclerosis Complex Research Conference will take place at the Royal College of Physicians in London, UK November 12-14, 2020.
TSC Matters Post
TSC Preclinical Consortium Meeting
The TSC Alliance launched the TSC Preclinical Consortium in 2016, in collaboration with industry and academia, to test the efficacy of candidate therapeutic drugs and advance the best to the clinical stage.
TSC Matters Post
Upcoming Step Forward to Cure TSC Walks
“And that is how change happens. One gesture. One person. One moment at a time.” ― Libba Bray, The Sweet Far Thing Sometimes simple things can make a huge difference.
TSC Matters Post
#March4TSCresearch Update
Thanks to the incredible advocacy of our volunteers, over half of the House signed the FY20 House Dear Colleague Letter! It closed with 232 signatures, making it our most signed
TSC Matters Post
Boston Regional TSC & LAM Conference
The TSC Alliance and The LAM Foundation are co-hosting five Regional TSC & LAM Conferences in 2019! Focusing on patients and caregivers, conferences will take place in Boston (April 13), St. Louis (June 15), Chicago (September 7), Atlanta (September 21), and Los
TSC Matters Post
Dr. David Kwiatkowski at the Brigham & Women’s Hospital in Boston Seeks Biospecimens for LAM/TSC Research
His research involves analyzing left over fluid and tissue samples from chest and abdominal drains and surgery. After the fluid or tissue is removed and processed by your hospital, he
TSC Matters Post
Clinical Trial for Individuals Diagnosed with Tuberous Sclerosis Complex (TSC) and Cutaneous Angiofibromas (Valid through June 2019)
We are currently conducting a clinical trial for individuals diagnosed with TSC with facial bumps called cutaneous angiofibromas. The goal of this study is to investigate if the study drug,
TSC Matters Post
Phenotypic Variability in Tuberous Sclerosis Complex (TSC) (Study Valid through September 1, 2021)
Dr. Narayanan and colleagues at the Translational Genomics Research Institute (TGen) in Phoenix, Arizona are conducting a research study aimed at identifying genetic modifiers of disease severity in TSC. For
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Are you looking for samples from TSC patients to use in your lab? The TSC Biosample Repository has a growing collection of samples tied to phenotypic data. In most cases,
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Are you looking for samples from TSC patients to use in your lab? The TSC Biosample Repository has a growing collection of samples tied to phenotypic data. In most cases,
TSC Alert
Call for Proposals: TSC2+/- A/J Mice – Due October 22
The TSC Preclinical Consortium is currently running three animal models, one of which is the Tsc2+/- A/J strain (Woodrum et al 2010, Guo and Kwiatkowski 2013). Large cohorts of age-matched mice are
TSC Alert
Seed Grants for TSC Biosample Research – Due August 13
The TSC Alliance is soliciting applications for seed funding for research using samples from the TSC Biosample Repository.
TSC Alert
Call for Proposals: TSC2+/- A/J mice – Due May 4
The TSC Preclinical Consortium is currently running three animal models, one of which is the Tsc2+/- A/J strain (Woodrum et al 2010, Guo and Kwiatkowski 2013). A/J mice are challenging
TSC Alert
Now Accepting Letters of Intent for TSC Alliance Grants and Postdoctoral Fellowships
We invite researchers worldwide to apply for a Research Grant or Postdoctoral Fellowship from the TSC Alliance. Letters of Intent are due by May 7, 2018.
TSC Alert
New Sample Types Available in TSC Biosample Repository
The TSC Alliance signed an agreement with Erasmus MC to include the TSC1- and TSC2-knockout HEK293T cell lines from the Nellist laboratory in the TSC Biosample Repository. The TSC Alliance can distribute
TSC Alert
New Clinics Recognized by TSC Alliance Board of Directors
The TSC Alliance Board of Directors recently recognized 17 new TSC clinics, including the first TSC clinic in Mexico. Clinics recognized by the TSC Alliance must adhere to the TSC
TSC Alert
Serial Samples in the TSC Biosample Repository
Having entered its second year, the TSC Biosample Repository is beginning to receive serial blood samples from individuals who donated one year ago. Although we have only three such serial
TSC Alert
AES 2017: TSC Preclinical Consortium Presentation on December 3
If you will be attending the American Epilepsy Society meeting in Washington, DC in December, please join us for TSC Alliance Chief Scientific Officer Dr. Steve Roberds’ presentation on the
TSC Alert
TSC Biosample Repository Update – August 2017
Our TSC Biosample Repository now has 329 biosamples, including 203 blood, buccal, or tissue samples from participants enrolled in the Natural History Database project. The Biosample Repository also includes blood samples
TSC Alert
TSC Biosample Repository Update – June 2017
Our TSC Biosample Repository now has 258 biosamples, including 143 blood or buccal samples from participants enrolled in the Natural History Database project. The Biosample Repository also includes blood samples from
TSC Alert
Recap: Early-Stage TSC Researcher Meeting
A group of early-career researchers held the Second Early-Stage Tuberous Sclerosis Complex Researcher Meeting on June 21, 2017, the day before the International Research Conference on TSC and LAM: Innovating
TSC Alert
Recap: 2017 International Research Conference on TSC and LAM
The 2017 International Research Conference on TSC and LAM: Innovating Through Partnerships was an astounding success! More than 230 researchers, clinicians, nurses and advocacy group leaders attended, coming from 27
TSC Alert
TSCRP Funding Opportunities Available
The Tuberous Sclerosis Complex Research Program (TSCRP) is accepting applications for the fiscal year 2017 grant cycle. Letters of intent are due July 11, 2017. Three award mechanisms are available this
TSC Alert
Early-Stage TSC Researchers Meeting – Deadline for Abstracts is May 8
Early-career researchers are invited to attend the Second Early-Stage Tuberous Sclerosis Complex Researcher Meeting on June 21, 2017. This meeting is organized by an international collective of early-career researchers and
TSC Alert
TSC Preclinical Consortium Accepting New Compounds
The TSC Preclinical Consortium invites researchers and industry partners to request testing of new compounds.
TSC Alert
Register for the 2017 International Research Conference on TSC and LAM
TSC Alliance and The LAM Foundation invite you to register for the 2017 International Research Conference on TSC and LAM, to be held June 22-24 at the Hyatt Regency on
TSC Alert
The New TSC Alert
Welcome to the new TSC Alert, a monthly electronic newsletter for TSC researchers. It provides updates on TSC research resources, conferences and clinical studies, as well as news that may be
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TSC Alert
TSC Alert
TSC Biosample Repository Update – March 2017
Our TSC Biosample Repository now has 203 blood samples from individuals with TSC (and some parents of children with TSC who do not have TSC themselves). These samples are linked to
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Find a TSC Clinic
The TSC Alliance supports the vital role a tuberous sclerosis complex (TSC) clinic can play in improving the lives of TSC patients. Use the resources below to find a TSC
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About TSC
Tuberous sclerosis complex (TSC) is a complicated disease that manifests differently from person to person. But thanks to earlier diagnosis and better treatments, those affected by TSC are living healthier,
TSC Alert
Navigating Housing Options for Dependent Adults (sponsored by Nobelpharma America)
In this episode of TSC Now host Dan Klein is joined by Bruce Hainan and Jim Kotsailidis from Nobelpharma America, LLC and Shelly Meitzler, TSC Alliance Director of Outreach and Support,
Event
Adult Topic Call
Adult topic calls provide a forum for independent or semi-independent adults with TSC to connect with other adults via Zoom and learn from experts on a wide array of relevant
Event
Adult Topic Call
Adult topic calls provide a forum for independent or semi-independent adults with TSC to connect with other adults via Zoom and learn from experts on a wide array of relevant
Event
Adult Topic Call
Adult topic calls provide a forum for independent or semi-independent adults with TSC to connect with other adults via Zoom and learn from experts on a wide array of relevant
Event
Adult Topic Call
Adult topic calls provide a forum for independent or semi-independent adults with TSC to connect with other adults via Zoom and learn from experts on a wide array of relevant
Event
Adult Topic Call
Adult topic calls provide a forum for independent or semi-independent adults with TSC to connect with other adults via Zoom and learn from experts on a wide array of relevant
Event
Adult Topic Call
Adult topic calls provide a forum for independent or semi-independent adults with TSC to connect with other adults via Zoom and learn from experts on a wide array of relevant
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TS Canada ST Educational Series – Strategies for ASD and behavior in tuberous sclerosis complex
Tuberous Sclerosis Canada Sclérose Tubéreuse (TSC Canada ST) will continue hosting an educational series in 2025 to empower patients and their families with knowledge and resources related to tuberous sclerosis
Resource
2024 TS Canada ST Educational Series – Introduction to TAND (Recording)
If you missed the last 2024 Canadian TSC Educational Series session, Introduction to TAND, you can watch the videos below: Introduction to TAND (PART 1) Introduction to TAND (PART
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Caregiver Sleep Study
The University of Birmingham are conducting a study ‘Understanding Caregiver Experiences of Sleep Management Difficulties in Individuals with Tuberous Sclerosis Complex’. If you are a caregiver of a person with
Team Member
Alexis Ross
Alexis joined the TSC Alliance as the Development Coordinator in December 2024. She recently graduated with her master’s in communications from Johns Hopkins University, where she studied how communications issues
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Onboarding
<Back Onboarding We’re thrilled to have you join the TSC Alliance volunteer leadership team! This onboarding section is your first step in learning about our mission, our community and your
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Current Volunteers
<Back Current Volunteers Welcome to the Current Volunteer section of the Community Leadership Hub! This is your one-stop resource for staying inspired, informed and connected as a TSC Alliance
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Drug-Resistant and Undertreated Epilepsy (sponsored by LivaNova)
In honor of National Epilepsy Awareness Month, TSC Now host Dan Klein is joined by Steven Wolf, MD, Director at the TSC Clinic Without Walls serving NYC, Westchester, Hudson Valley
FAQ
Anya’s Accelerator
The goal of Anya’s Accelerator is to catalyze the development of biomarkers to aid clinical care and the development of interventions for autism behaviors and other impactful aspects of TAND.
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Anya’s Accelerator
We are so grateful for the work and progress the TSC Alliance has made over the past 20 years. Anya’s Accelerator will provide an opportunity to advance TAND research and
FAQ
Neuropsychiatric evaluations we can accept
Autism measures like ADOS-2 and ADIR Anxiety measures like GAD-7 Depression measures like NDDI-E Intellectual disability measures like Vineland (version 1 or 2) If you have questions about whether your
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24th Annual Comedy for a Cure
Get your tickets to Comedy for a Cure! Join us for an evening of laughter and hope that’s out of this world! Sunday, April 6, 2025 | Vibiana Learn more and
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Announcing the 2025 Transition Webinar Series
The 2025 Transition Webinar Series will consist of six one-hour long webinars that feature local clinicians and consultants with expertise in the transition from pediatric to adult health care, as
Team Member
Heather Radtke, MS, CGC
Heather joined the TSC Alliance in November 2024, having worked with families with TSC and other genetic conditions for more than 25 years. Heather received her bachelor’s degree in Genetics
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Autism Society of North Carolina Virtual Information Session
Join the TSC Alliance: Carolinas Community Region and the Autism Society of North Carolina for a virtual information session on Tuesday, October 22, 2024, at 7 pm ET. The Autism
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Tuberous sclerosis complex clinic family fun day!
Join the Corewell Health East Beaumont Children’s team for a TSC clinic family fun day on Wednesday, July 24, 2024 from 2-5 PM EDT at the William Beaumont University Hospital
TSC Matters Post
Back to school support resources
As we approach back to school season, we want to remind you about the support and resources the TSC Alliance provides. Shelly Meitzler, Director, Community Outreach & Support, and
TSC Matters Post
Steven Sparagana Legacy Fund
Dr. Steven Sparagana’s dedication and pioneering work have been instrumental in advancing tuberous sclerosis complex (TSC) research and improving the lives of countless individuals and families affected by this disease. He
News Item
In Memoriam: Gina Lee, PhD, University of California Irvine
The TSC Alliance and the tuberous sclerosis complex (TSC) community are mourning the recent loss of Gina Lee, PhD, TSC researcher and Assistant Professor at the University of California Irvine
Resource
50th Anniversary Spotlight – Shonnie Johnson
2024 marks the 50th anniversary of the TSC Alliance, which was founded by four moms in Southern California in 1974. To celebrate the anniversary of the organization, throughout the year
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Tri-State Area Community Gathering
Join TSC parent Emily Docktor, LCSW, for an informal, in-person meet up! This series of gatherings will provide an opportunity to talk about building connections, supporting self and others, parent-child relationships, siblings and balance, and resentment/forgiveness and self-care. These gatherings will
Event
Tri-State Area Community Gathering
Join TSC parent Emily Docktor, LCSW, for an informal, in-person meet up! This series of gatherings will provide an opportunity to talk about building connections, supporting self and others, parent-child relationships, siblings and balance, and resentment/forgiveness and self-care. These gatherings will
Event
Tri-State Area Community Gathering
Join TSC parent Emily Docktor, LCSW, for an informal, in-person meet up! This series of gatherings will provide an opportunity to talk about building connections, supporting self and others, parent-child relationships, siblings and balance, and resentment/forgiveness and self-care. These gatherings will
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2024 Transition Workshop Series – Salt Lake City, Utah
One-day Transition Workshops will feature local clinicians and resources specializing in the transition from pediatric to adult health care and transitions from postsecondary education that include: further education, employment, and
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2024 Transition Workshop Series – Memphis, TN
One-day Transition Workshops will feature local clinicians and resources specializing in the transition from pediatric to adult health care and transitions from postsecondary education that include: further education, employment, and
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Announcing the Steven Sparagana Legacy Fund
The Steven Sparagana Legacy Fund was created in honor of Steven Sparagana, MD’s retirement in July 2024. The fund will provide an ongoing source of revenue in support of the
Resource
How to participate in behavior and TAND research (2024 webinar)
The TSC Alliance hosted a webinar on May 13, 2024 about two studies on understanding and treating TSC-associated neuropsychiatric disorders (TAND), with a specific focus on behavior problems in children
TSC Matters Post
Ongoing Early Intervention and Autism trials
See below for ongoing trials.
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Five things healthcare providers should know
Are you providing care to a patient with a suspected tuberous sclerosis complex (TSC) diagnosis? Here are five things you need to know: Early diagnosis and management are critical to
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2024 TCS New York City Marathon
The TSC Alliance and Team TSC are proud to be an Official Charity Partner with the 2024 TCS New York City Marathon on Sunday, November 3, 2024. The TCS New York City Marathon course
FAQ
View our 2024 team members
The TSC Alliance was proud to be an Official Charity Partner with the 2024 United Airlines New York City Half Marathon on Sunday, March 17, 2024, with five Team TSC
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23rd Annual Comedy for a Cure
Led by event chair Anita Bhatia, Comedy for a Cure will be held Sunday, April 14, 2024, at Vibiana in Los Angeles. The event begins at 5 pm with red carpet
TSC Matters Post
50th Anniversary Spotlight: Susan McBrine
Susan McBrine is one of the four founding moms of the National Tuberous Sclerosis Association, Inc. (the original name of the TSC Alliance) along with Adrianne Cohen, Verna Morris and
TSC Alert
2024 grant cycle now open!
The portal for the 2024 TSC Alliance Research Grant and Postdoctoral Fellowship program is now open on ProposalCentral. Interested applicants may submit a letter of intent until Monday, May 13, 2024. The TSC Alliance is
Story of Hope
Misty Barnhart
My name is Misty. I am 42, a wife, a mother, and a Gram. I was diagnosed with tuberous sclerosis complex (TSC) in my early teens and was told that
Story of Hope
Brynleigh Shillinger
Brynleigh was diagnosed with tuberous sclerosis complex (TSC) at 9 1/2 months when she began having complex partial seizures. After an EEG, brain MRI, cardiac scans, an abdominal ultrasound, skin
FAQ
2009
Fiscal Year 2009 (July 1, 2008 – June 30, 2009) Operating Board FY2010 Board Committee Goals TSC Alliance Board of Directors Meeting Minutes, June 19, 2008 TSC Alliance Board of
FAQ
2010
Fiscal Year 2010 (July 1, 2009 – June 30, 2010) Welcome to BoardLink, which provides the most up-to-date information for the TSC Alliance Board of Directors, including meeting documents, committee meeting minutes
FAQ
2010.5 and 2011
Fiscal Years 2010.5 & 2011 (July 1, 2010 – December 31, 2011) Operating Board Operating Board of Directors Meeting Minutes, June 16, 2010 (Approved Sept. 25, 2010) Operating Board of
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2012
Fiscal Year 2012 (January 1, 2012 – December 31, 2012) FY 2013 Budget FY 2013 Approved Budget FY 2013 Budget Narrative 2014 National TSC Conference Analysis Narrative: Pros/Cons of National
FAQ
2013
Fiscal Year 2013 (January 1, 2013 – December 31, 2013) Operating Board FY 2013 Board of Directors Member Contact List FY 2013 Board Committee Assignments FY 2013 Board and Committee
FAQ
2014
Fiscal Year 2014 (January 1, 2014 – December 31, 2014) Operating Board FY 2014 TS Alliance Board of Directors Member Contact List FY 2014 Board Goals FY 2014 Board Committee Assignments
FAQ
2015
Fiscal Year 2015 (January 1, 2015 – December 31, 2015) Operating Board FY 2015 TS Alliance Board of Directors Member Contact List FY 2015 Board Orientation Manual FY 2015 Board Goals
FAQ
2016
Fiscal Year 2016 (Jan 1 – Dec 31, 2016) Archives Operating Board FY 2016 Board of Directors Contact List FY 2016 Board Goals FY 2016 Board Committee Assignments FY 2017
FAQ
2017
Fiscal Year 2017 (January 1 – December 31, 2017) October 12-13, 2017 Board Meeting Resources Board Meeting Materials Draft 2018 Budget Summary 2018 Budget Narrative 2017 Clinic Applicants Summary 2017
FAQ
2018
Fiscal Year 2018 (January 1 – December 31, 2018) Operating Board FY 2018 Board of Directors Contact List FY 2018 Committee Assignments FY 2018 Board Committee Meeting Schedule FY 2018
FAQ
2019
Fiscal Year 2019 (January 1 – December 31, 2019) Operating Board FY 2019 Board of Directors Contact List FY 2019 Board Committee Assignments FY 2019 Board Committee Meeting Schedule FY
FAQ
2020
Fiscal Year 2020 (January 1 – December 31, 2020) Operating Board FY 2020 Board of Directors Contact List FY 2020 Board Committee Assignments FY 2020 Board Meeting Schedule Approved and
FAQ
2021
Fiscal Year 2021 (January 1 – December 31, 2021) Operating Board Board of Directors Contact List FY 2021 Board Committee Assignments FY 2021 Board Meeting Schedule Approved and Amended By-Laws,
FAQ
2022
Fiscal Year 2022 (January 1 – December 31, 2022) Operating Board Operating Board of Directors Contact List FY 2022 Board Committee Assignments FY 2022 Board Meeting Schedule Approved and Amended
FAQ
Board Manual FY 2024
If you would prefer a hard copy of any of these materials, please contact Rachel Wojnilower at (301) 562-9890 or rwojnilower@tscalliance.org. TSC Alliance Board Orientation, recorded January 17, 2024 Committee
FAQ
2023
Fiscal Year 2023 (January 1 – December 31, 2023), Fall Board of Directors Meeting, October 12-13, 2023 Table of Contents Overall Documents Strategic Planning Research Campaign Outreach Finance Global Relations Audit
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Disclaimer
This site is intended to provide basic information about tuberous sclerosis complex (TSC). It is not intended to, nor does it, constitute medical or other advice. Readers are warned not
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Privacy Policy
Approved by the TSC Alliance Executive Committee: May 4, 2018 Revisions Approved by Executive Committee: January 30, 2019 The TSC Alliance (“TSC Alliance,” or “we”, “us”, “our”) respects your privacy.
Story of Hope
Ryelyn Thompson
Ryelyn is two years old and one of five children. Ryelyn’s family found out she possibly had TSC at a doctor’s visit while her mother was pregnant. She is a
Story of Hope
Christian Martinez
Christian’s mother found out about tuberous sclerosis complex two days before he was born. She had never heard of TSC and had no idea how their lives were going to
Story of Hope
Brian Quinn
Brian was diagnosed with TSC as a young child, which caused seizures throughout his childhood until the correct medication and dosage were found. Brian had a learning disability when he
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Contact Us
TSC Alliance 8737 Colesville Road, Suite 400 Silver Spring, Maryland 20910-4487 GET DIRECTIONS Staff Directory Phone Our phones are available 9-5 pm ET, Mon-Fri. Tel: (301) 562-9890 Toll-Free: 1-800-225-6872 Emergency
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Meet the Future Leaders Class of 2024
The TSC Alliance is thrilled to introduce our Future Leaders class of 2024! Our Future Leaders are a group of young adults ages 17 through 25 who are dedicated to
FAQ
Navigation Guides
The TSC Alliance’s “Navigation Guides” provide essential information to help guide individuals and families through the complexities of tuberous sclerosis complex (TSC) across the lifespan. TSC uniquely affects each individual
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Navigation Guides
The TSC Alliance’s “Navigation Guides” provide essential information to help guide individuals and families through the complexities of tuberous sclerosis complex (TSC) across the lifespan. TSC uniquely affects each individual
Resource
Sample letter to a family member
Telling your family members about TSC can be difficult and overwhelming. Let us help by providing a letter you can use to help explain TSC and provide answers to their questions.
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Accessibility
The TSC Alliance has made our website more accessible, thanks to a partnership with accessiBe, a company devoted to educating the world about the importance of inclusivity and web accessibility.
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Fund research
Investment to Accelerate Research Although significant advances have been made in the diagnosis and treatment of TSC in just the last decade, the vast majority of children and adults with
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Honor a loved one
Tributes Tribute gifts can be made in honor or in memory of individuals. It is a wonderful way to send a birthday or anniversary wish, or congratulations for retirement, a
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Media
Media members and anyone seeking additional information about tuberous sclerosis complex or the TSC Alliance may direct inquiries to: Jaye Isham Chief Outreach Officer TSC Alliance 8737 Colesville Road, Suite
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Shop Our Store
Products Stylo Bracelet Aimant Bouteille How To Order To place an order, please email TSCanadaST@gmail.com and indicate how many and which items you would like to order. Payment will be
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Create a Personal Fundraising Page
There is no limit to the many different ways you can personally help to raise funds and awareness for TSC. You can easily turn a fun activity, a birthday party
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Make a Donation
A donation to Tuberous Sclerosis Canada (TS Canada ST) can make a difference in the lives of those affected by tuberous sclerosis complex (TSC) by funding research and educational forums,
FAQ
Donate a Car to Tuberous Sclerosis Canada
Do you have a car to donate? Consider donating a car to Tuberous Sclerosis Canada by visiting donate a car Canada. Donate A Car Canada accepts Vehicle Donations for Tuberous
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Volunteer
Tuberous Sclerosis Canada is seeking volunteers to help us with our efforts to combat tuberous sclerosis complex (TSC). Your efforts will help us establish local, provincial and national connections for
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Upcoming Events
No current events scheduled. Past Events Did you miss the TSC Canada ST & TSC Alliance Research Collaboration Webinar? Watch it here:
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Additional Resources
Brain & Epilepsy Organizations Canadian Epilepsy Alliance: www.epilepsymatters.com International Bureau for Epilepsy: www.ibe-epilepsy.org Epilepsy Foundation: www.epilepsyfoundation.org BC Epilepsy Society: www.bcepilepsy.com Montreal Neurological Institute and Hospital: www.mni.mcgill.ca Childrens Neurology: www.childneurologysociety.org Epilepsy
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Organ & Tissue Donation
Biosample Repository and Natural History Database The TSC Natural History Database collects clinical data used to document the impact of TSC on a person’s health, over his or her lifetime.
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Bylaws & Financials
Bylaws TSCST bylaw Financial Statements Click here to access our latest Canadian Registered Charity Return
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Board of Directors
Cathy Evanochko, Chair Cathy Evanochko is one of the founding board members of the organization. In the days prior to the availability of the Internet, an article about Cathy’s family
FAQ
A message from our Chair
Every unique journey with tuberous sclerosis complex (TSC) is marked by hazards big and small, filled with unique twists and turns, none of which are easy. When we receive a
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TS Canada ST
Tuberous Sclerosis Canada Sclérose Tubéreuse Established 1990 Mission TS Canada ST is a voluntary, non-profit, charitable organization dedicated to the principles of raising public awareness of tuberous sclerosis complex, encouraging
FAQ
Models
105k graft (Tsc2-null) immune-competent Tsc2-AJ spontaneous renal cystadenoma
FAQ
Confidential drug screening
Company Members have the option to remain anonymous and retain confidentiality and ownership of data by paying for experiments as defined in the Consortium Operating Agreement. Testing of compounds is
FAQ
Zoom Backgrounds
To download the Zoom background, right click the image and click “Save image as…”. See below images for instructions on how to use a background in Zoom. Instructions for uploading
FAQ
E-Packet and Dear Colleague Letters
Download the FY2025 Congressional E-Packet Included in the Congressional E-Packet: FY25 Justification About TSC/TSC Alliance Lay TSC Pathway TSCRP Program Overview FY2025 Dear Colleague Letters Final Senate Dear Colleague Letter
FAQ
Preparation Materials
Please note these materials are for volunteer use only and not meant to be shared with your representative. Samples Sample Appointment Request via Email Sample TSC Family Letter Sample TSC Friends
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Sudden unexpected death in epilepsy (SUDEP) awareness and grief support (2023 Webinar Series)
Presented by: Peter Crino, MD, PhD, TSC Clinic Director at the University of Maryland Medical Center and Ashley Pounders, MSN, FNP-C, Director, Medical Affairs at the TSC Alliance Sudden unexpected
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ABCs and 1,2,3s of preparing for back to school (2023 Webinar Series)
Shelly Meitzler, Director, Outreach & Support, and Elizabeth Skufca, Community Programs Manager, discuss the ABCs and 1, 2, 3s of preparing for back to school. Download the presentation Download the
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Alianzas en países que son hispanoparlantes
Alianzas en países que son hispanoparlantes TSC Alliance of Mexico – Alianza de Esclerosis Tuberosa en México Facebook: https://www.facebook.com/tsallianceofmexico Asociación Argentina de Esclerosis Tuberosa (ARGET) Email: asociacionarget@gmail.com Facebook: https://www.facebook.com/AsociacionArget
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Clínicas especializadas en el CET
Clínicas especializadas en el CET que cuentan con un doctor o un empleado que habla español con fluidez: California – Loma Linda The Tuberous Sclerosis Clinic at Loma Linda University
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RAINBOW Study (2023 Webinar Series)
This webinar discusses behaviors in TSC and the Remote Assessment and Intervention for Behavior Problems in Kids With TSC (RAINBOW). Presenters: Nicole McDonald, PhD, Assistant Professor, UCLA Division of Child
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Share your story of hope
Please complete the form below to share your story of hope. By sharing your story, you help inspire hope in everyone with tuberous sclerosis complex (TSC) and let them know
FAQ
Previous Gomez Award recipients
Anna Jansen, MD, PhD, Vrije Universiteit Brussel, Belgium Kari Luther Rosbeck, TSC Alliance Darcy Krueger, MD, PhD, Cincinnati Children’s Hospital Mark Nellist, PhD, Erasmus MC Chris Kingswood, MB, BS, FRCP,
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Current biosample steering committee members
Thomas Blanchard, PhD (Director, University of Maryland Brain and Tissue Bank) Peter Crino, MD, PhD (University of Maryland Medical Center) Petrus de Vries, PhD, MBChB, FRCPsych (University of Capetown) Maureen
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Samples currently available
As of December 1, 2024, the TSC Biosample Repository has the following in their inventory: Whole Blood 265 DNA* 1 PBMC 7 DBS 1167 Plasma 1024 WBC – Buffy Coat
FAQ
Future Models
Tsc1-L7-Cre
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Models
Tsc1-GFAP-CKO Tsc2-GFAP-CKO Tsc2-Syn1-Cre Tsc1 & Tsc2 stochastic models
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Urology
Swallow E, King S, Song J, Peeples M, Signorovitch JE, Liu Z, Prestifilippo J, Frost M, Kohrman M, Korf B, Krueger D, Sparagana S. Patterns of disease monitoring and treatment
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Tumors
Loubert F, House AA, Larochelle C, Major P, Keezer MR. Development and internal validation of a clinical risk score to predict incident renal and pulmonary tumors in people with tuberous
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Ophthalmology
Aronow ME, Nakagawa JA, Gupta A, Traboulsi EI, Singh AD. Tuberous sclerosis complex: genotype/phenotype correlation of retinal findings. Ophthalmology. 2012;119(9):1917-1923. doi: 1016/j.ophtha.2012.03.020. This paper evaluates the genetic and clinical feature
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Dermatology
Boggarapu S, Roberds SL, Nakagawa JA, Beresford E. Characterization and management of facial angiofibroma related to tuberous sclerosis complex in the United States: retrospective analysis of the natural history database.
FAQ
CNS and TAND
Parthasarathy S, Mahalingam R, Melchiorre J, Harowitz J, and Devinsky O. Mortality in tuberous sclerosis complex. Epilepsy & Behavior 2021 Aug 1, Volume 121, 108032. https://doi.org/10.1016/j.yebeh.2021.108032 The authors of this
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Leadership groups
Steering Committee Dean Aguiar, PhD, TSC Alliance Tami Brtan, TSC Community Lisa Henske, MD, Brigham and Women’s Hospital Will Hind, PhD, Jazz Pharmaceuticals Dominique Pichard, MD, National Center for Advancing
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Recent publications
Researchers conducting studies with the TSC Preclinical Consortium have published several articles in well-regarded, peer-reviewed biomedical journals, including: Shrestha, S., et al. Angiotensin II receptor type 1 blockade regulates Klotho
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Federal funding
Department of Defense Congressionally Directed Medical Research Program, Tuberous Sclerosis Complex Research Program (TSCRP) Department of Health and Human Services
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Past grant awards
FY 2021 Research Grant Awards Nicola Alesi, MD, PhD Brigham and Women’s Hospital Role of TFEB in the pathogenesis and therapy of TSC kidney manifestations Gerta Hoxhaj, PhD UT Southwestern
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Currently funded grant awards
FY 2023 Postdoctoral Fellowship Awards Stephanie Dooves, PhD Vrije Universiteit Amsterdam The role of EGF signaling in astrocyte-neuron interactions in TSC Joohwan Kim, PhD University of California, Irvine Identify metabolite
FAQ
Keith Hall Research Grant Award
The Keith Hall Research Grant Award was established in memory of Keith Hall, an adult with TSC and a former TSC Alliance board chair and community leader. Keith participated extensively
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Policies
Duration and Budget Typical duration is two years. Can be shorter if appropriate for the project. Maximum total costs of $75,000 per year ($150,000 total). Postdoctoral Fellowship proposals must include
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Types of grants
Wong Family Foundation Research Award Thanks to generous support from the Wong Family Foundation, the TSC Alliance is proud to again offer this special funding opportunity as part of our
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Important changes implemented in recent cycles
Efforts to increase diversity, equity, and inclusion of traditionally underrepresented groups in TSC research (for example, see Notice of NIH’s Interest in Diversity, although not all underrepresented populations listed by
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Manuel R. Gomez Award
The TSC Alliance grants the Manuel R. Gomez Award to individuals who have made a significant impact on our understanding of TSC in research, and/or have impacted the delivery of
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International Scientific Advisory Board
The TSC Alliance International Scientific Advisory Board (ISAB) is comprised of both U.S. and international leaders in all areas of science relating to TSC research. The mission of the ISAB
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Research conferences
By bringing together researchers from different disciplines and representing basic, translational, and clinical science, TSC Alliance-hosted research conferences provide a truly unique space to foster collaborations, spark new ideas and
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Clinical Research Consortium
The TSC Clinical Research Consortium has been the cornerstone of Federally funded research efforts in the US for the past decade. Only through the collaborative research efforts of the TSC
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Biosample Repository
The Natural History Database and Biosample Repository has been instrumental in advancing my LAM research. The extensive resources within the database have been valuable for my investigations, and the accessibility
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Natural History Database
The Natural History Database is a fantastic resource for research in TSC. It is an incredible resource for those in epidemiology, given its unparalleled size. It is an incredible resource
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Preclinical research
The TSC Alliance and the Preclinical Consortium have been instrumental partners in establishing the preclinical models and data necessary for development of our candidate therapeutic. The historical data sets, knowledge
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Grants & funding
I will forever be grateful to the TSC Alliance for funding my research and for their support throughout the grant process. Having a leading TSC organization believe in my work
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Research Strategy
The TSC Alliance draws physicians, researchers, industry partners, and the TSC community into the research process, and thus they are uniquely positioned to help drastically alter the course of this
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Careers
Help us create a future where everyone with TSC can live their fullest potential The TSC Alliance offers satisfying careers for people ready to bring their talent and skills to
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What are our guiding principles?
TSC Alliance is committed to operate and to deliver its programs using the following guiding principles: all actions must reflect the highest standard of integrity, candor and common decency; all
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What is our mission?
The TSC Alliance improves quality of life for everyone affected by TSC by catalyzing new treatments, driving research toward a cure and expanding access to lifelong support.
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What is the International Scientific Advisory Board (ISAB)?
The International Scientific Advisory Board was formed to provide scientific advice to the TSC Alliance staff and Board of Directors as needed, and to serve as expert reviewers of grant
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What is the Professional Advisory Board (PAB)?
The Professional Advisory Board was formed to provide clinical expertise and advice to the TSC Alliance staff, Board of Directors and constituents as requested; respond to requests for assistance with
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What is the role of the Board of Directors?
The TSC Alliance Board of Directors is responsible for the financial health and success of the organization. The board establishes policies and procedures to guide the organization, monitor the financial
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What is our hope for the future?
The TSC Alliance advocates with and on behalf of our community to ensure everyone living with TSC has what they need to live their fullest lives. With the power of individuals,
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What do we do?
The TSC Alliance is an internationally recognized nonprofit that does everything it takes to improve the lives of people with tuberous sclerosis complex (TSC). We drive research, increase care quality
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Corporate Advisory Board Members
Wilfred Cooper, Sr., Honorary Chair Chairman WNC & Associates Julianne Moore, Honorary Chair Martina Bebin, MD, MPA Co-Director University of Alabama TSC Clinic David Coit Managing Director North Atlantic Capitol
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Our Leadership
Operating Board of Directors The TSC Alliance Board of Directors has general oversight, fiduciary, policy development and ambassadorial responsibilities. The board develops and approves strategic plans that define the framework
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Our Vision
To create a future where everyone affected by tuberous sclerosis complex can live their fullest lives. 2024 – 2028 Strategic Plan Throughout 2023, members of the TSC Alliance Board of
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Diagnostic criteria
The clinical and genetic diagnostic criteria of 2021 are summarized below: MAJOR FEATURES MINOR FEATURES Hypomelanotic macules (≥3; at least 5mm diameter) “Confetti” skin lesions Angiofibroma (≥3) or fibrous cephalic
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Healthcare Providers
Tuberous sclerosis complex (TSC) is a complicated disorder that requires lifelong care from a variety of specialists. The TSC Alliance provides the resources below to connect healthcare providers with TSC
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Recursos
Afortunadamente existe una relación colaborativa entre los miembros de la comunidad CET incluyendo las familias afectadas, los voluntarios, investigadores, educadores, organizaciones de la industria y demás con la Alianza de
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¿Qué es el CET?
El complejo de esclerosis tuberosa (CET o TSC por sus siglas en inglés) es un padecimiento genético que afecta a muchos órganos y causa tumores que no son cancerosos en