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The TSC Alliance is collecting clinical information about individuals with TSC who were infected with COVID-19. Please circulate the following to your patients:
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 for use in diverse projects, ranging from quantification of sphingolipids in plasma to investigating mitochondrial DNA heteroplasmy.
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).
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.
Hear leading experts in tuberous sclerosis complex (TSC) discuss recent updates to consensus recommendations and offer practical guidance for the diagnosis, surveillance, and management of TSC in a new CME-certified activity from the PeerView Institute for Medical Education: Applying Evidence to Practice–Updated Consensus Recommendations for the Diagnosis, Surveillance, and Management of Tuberous Sclerosis Complex. This opportunity is available until April 13, 2022. Learn More
The Tuberous Sclerosis Complex Research Program (TSCRP) is now accepting Pre-Applications for the fiscal year 2021 grant cycle.
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.
On Sunday May 16, the Tuberous Sclerosis Alliance formally unveiled a new brand and new name: TSC Alliance. We also introduced a new tagline, “Hope no matter how complex.”