Our newest CVR involved incredible communities, and we are pleased to share our CVR on GM2, GM1, and Canavan. We'd like to extend our thanks to everyone who participated. We hope patients and caregivers find value in the report.
In April 2019, FDA held a public meeting to obtain patient and caregiver perspectives on the common issues and symptoms between rare diseases with the goal of synergizing and advancing medical product development. To support this effort, TREND Community is launching a series of initiatives to understand the commonalities and differences between rare diseases by analyzing years’ worth of real-world social data. For our first data exploration, we analyzed two private Facebook groups to identify t
The GM1 & GM2 Tanganil Health Initiative was created in collaboration with the National Tay-Sachs and Allied Diseases Association (NTSAD) and the Cure Tay-Sachs Foundation (CTSF) to document patient experiences with off label use of Tanganil. Tanganil is a medication available without a prescription in Europe and indicated for the treatment of positional vertigo (dizziness). This Health Initiative was designed to better understand the benefits and risks experienced by patients taking Tanganil to