UPDATE: The Department of Health & Human Services (HHS), in coordination with NIH and Operation Warp Speed, has launched a central web portal called Combat COVID (combatcovid.hhs.gov/).
The portal is a one-stop resource to help members of the public and doctors find information about different stages of COVID-19 illness, NIH-supported COVID-19 prevention and treatment clinical trials, and locations to donate plasma. The website provides clear and easy-to-understand information for:
- People who have never had COVID-19 who may be interested in joining a vaccine or other prevention trial
- People who have COVID-19 and want to participate in a treatment clinical trial
- People who have recovered from COVID-19 who may be interested in donating plasma
- Doctors and other healthcare providers who want more information to guide their patients who have COVID-19
Because current data do not provide clear answers for many TSC patients’ questions, the TSC Alliance’s Science and Medical Committee, drawing on opinions from key leaders in TSC clinical care, offers some general considerations for how to answer questions from TSC patients about COVID-19 and how to provide individualized care for TSC patients during the COVID-19 pandemic based on the information available to date in the publication listed below.
Download Physician Recommendations
The TSC Alliance also developed a letter template physicians can use for their patients who are having trouble with their insurers paying for 90-day supply of their medications.
You can see all of the TSC Alliance’s COVID-19 resources.