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Childhood diagnosis
Receiving a diagnosis of a rare genetic disease for your child is overwhelming. Depending on the findings, it is important to have on-going conversations with your healthcare team on what
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Prenatal diagnosis
Receiving a diagnosis of a rare genetic disease while pregnant can be overwhelming. Depending on the findings, it is important to have ongoing conversations with your healthcare team on what
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Sabril Supply Issue Recommendations
The TSC Alliance® is aware of the current supply issue with Sabril Oral Solution, 500 mg packets; it does NOT affect Sabril tablets 500mg. Lundbeck estimates this issue will be
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0 to 6 months old with TSC needed for research study
Why are we doing this study? Epilepsy is very common in infants diagnosed with tuberous sclerosis complex (TSC) and often very difficult to treat. This study tests if sirolimus, a
TSC Alert
MILED Trial Currently Enrolling Women with LAM
Please circulate the following to your patients with lymphangioleiomyomatosis (LAM): The MILED Trial is a new research study designed to answer the question of whether we should be starting sirolimus
TSC Alert
Register Your Interest in the International TSC & LAM Research Conference
The TSC Alliance and The LAM Foundation will be co-hosting the 2021 Virtual International TSC & LAM Conference: Driving Discoveries Beyond Boundaries, presented by Greenwich Biosciences and the Rothberg Institute of Childhood Diseases, on October 28-30,
TSC Alert
Save the Date for the 2021 Virtual International TSC & LAM Research Conference
Mark your calendars now for the 2021 Virtual International TSC & LAM Research Conference, co-hosted by the TSC Alliance and The LAM Foundation, scheduled for October 28-30, 2021. The conference
TSC Alert
Save the Date for the 2021 Virtual International TSC & LAM Research Conference
Mark your calendars now for the 2021 Virtual International TSC & LAM Research Conference, co-hosted by the TSC Alliance and The LAM Foundation, scheduled for October 28-30, 2021. The conference
TSC Alert
Save the Date for the 2021 Virtual International TSC & LAM Research Conference
Mark your calendars now for the 2021 Virtual International TSC & LAM Conference, co-hosted by the TSC Alliance and The LAM Foundation, scheduled for October 28-30, 2021. The conference will
TSC Alert
Save the Date for the 2021 Virtual International TSC & LAM Research Conference
Mark your calendars now for the 2021 Virtual International TSC & LAM Conference, co-hosted by the TSC Alliance and The LAM Foundation, scheduled for October 28-30, 2021.