We are deeply saddened by the events of the past week, which are shining a spotlight once again on the racial injustice and systemic inequity prevalent amongst us. The tragic deaths of George Floyd and many others highlight the fact that we have much work to do in forging an inclusive society. There is no neutral ground in the matter; we can either be part of the problem or part of the solution. TREND chooses to be a part of the latter. Let us all join this movement, condemn racism, and wor
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