TREND Community is announcing a research partnership with COMBINEDBrain, a new nonprofit dedicated to accelerating the path to cures and therapies for those with rare genetic neurodevelopmental disorders, by reducing the time and risk involved in drug development....
To use a screen reader, the text is copied below: 2019 Annual Letter Dear Community, 2019 was a year of discovery and progress for TREND. Our communities nearly tripled. We forged strong bonds with patients and caregivers, learning not just about the diseases that impact their day-to-day lives, but about their aspirations, hopes, and dreams. When our child was diagnosed with Prader-Willi syndrome (PWS), we felt so much relief when we found other parents in our position. Becoming part of a c...
Looking forward to this year’s Rare Disease Week on Capitol Hill, we wanted to understand the importance of our relationship with legislators so that we can continue to achieve progress....
Every party involved in healthcare has a vested interest in more patient involvement, from the way information is collected, to the way doctors interact with patients....
TREND is excited to announce the fact that biopharmaceutical company, Kiniksa, has received Breakthrough Therapy designation for rilonacept for the treatment of recurrent pericarditis....
The Data DIY workshop brought together experts throughout the world of rare disease to discuss collaboration in the collection and dissemination of data....
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