Undiagnosed Patient Organizations Begin Leveraging RARE-X
Retrieved on:
Friday, April 29, 2022
WASHINGTON, D.C., April 29, 2022 /PRNewswire-PRWeb/ -- Rare and Undiagnosed Network (RUN) and the Undiagnosed Diseases Network Foundation (UDNF) have entered a new collaboration with the global data-sharing platform RARE-X to help people with undiagnosed conditions, accelerate diagnosis, become discoverable, and more easily participate in research. RARE-X is a nonprofit organization that enables patients and disease communities to easily collect, manage, and share their health data through best-in-class technology and patient support. In June, RUN and UDNF will launch the new Undiagnosed Data Collection Program, supported by RARE-X.
Key Points:
- Whether empowering rare and undiagnosed patients and their families with genomic information, or building the community through advocacy, networking and support, RUN works to make life easier for the undiagnosed patient community," said Gina Szajnuk, co-founder and executive director of the Rare and Undiagnosed Network.
- The Undiagnosed Diseases Network Foundation supports undiagnosed, misdiagnosed, and newly diagnosed patients.
- The Undiagnosed Disease Network Foundation, aligned with the Undiagnosed Disease Network, a research study funded by the National Institutes of Health involving a dozen medical research institutions, already has a significant collection of patient-level and clinical data from undiagnosed patients.
- These organizations are using Undiagnosed Disease Day (April 29) to announce their collaboration with RARE-X.