The TSC Alliance has partnered with NeurologyLive to bring healthcare professionals treating neurological disorders the latest in research and practice. Check out our partner page. Subscribe to NeurologyLive to stay up to date on clinical trial news, FDA updates and more. Subscribe
The TSC Alliance is collecting clinical information about individuals with TSC who were infected with COVID-19. Please circulate the following to your patients: The TSC Alliance is collecting clinical information in their TSC Natural History Database about individuals with TSC who were infected with COVID-19. TSC researchers will use this information to help determine how medications such as everolimus (Afinitor®, Zortress®) or sirolimus (Rapamune®) and other TSC conditions affect the risk of getting COVID-19 and its severity. If you or your loved one with TSC had COVID-19 confirmed by testing, please consider participating in the TSC Alliance TSC Natural History…
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 passes. We can review and approve your applications for biosample use in advance so samples may be shipped as soon as is permissible by your institution. 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, we can ship these samples at no charge to the investigator. To date, we have shipped 842 samples…
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 will focus on structured, collaborative discussions on groundbreaking topics, such as:
Healx, a Cambridge, UK biotech, is focused on repurposing known molecules for rare diseases. As part of their Rare Treatment Accelerator (RTA) programme, Healx is looking to partner with academic institutions who have identified drug repurposing opportunities for rare diseases but who lack financial and clinical resources to take these all the way to patients. Healx could help with this as part of their Rare Treatment Accelerator 2.0 (RTA).
June 17-19, 2021 | Royal College of Physicians | Virtual The International Tuberous Sclerosis Complex Research Conference 2021: A Vision for the Future will take place virtually across three days.
The TSC Alliance invites healthcare professionals affiliated with a TSC Clinic, TSC Center of Excellence, or University Medical Center to subscribe to our new private listserv: firstname.lastname@example.org. Its primary purpose is for members to pose TSC-related cases or questions to their peers for feedback. Members may also use the listserv to seek opportunities for collaboration on TSC-related projects. The listserv will be monitored to ensure it is being used for appropriate communications. HOW TO SUBSCRIBE: Email email@example.com who will add you as a member. You should receive a “Welcome to list p2p” email from Groups List Manager firstname.lastname@example.org to confirm your membership.
Each year, the National Society of Genetic Counselors and Invitae sponsor The Heart of Genetic Counseling Award, which honors excellence in patient care provided by genetic counselors during some of the most challenging moments of a patient’s health journey.
Registration is now open for Reaching the Peak: A Science & Technology Career Summit, Research!America’s summit for early career researchers, on June 30, 2021, 11-6 pm ET.
The Tuberous Sclerosis Complex Research Program (TSCRP) is now accepting Pre-Applications for the fiscal year 2021 grant cycle.