31 Oct UDN PEER and UDNF Integrate Efforts to Strengthen Voice of UDN Participants
The Undiagnosed Diseases Network Patient Engagement and Advocacy Resource (UDN PEER) and the Undiagnosed Diseases Network Foundation (UDNF) are integrating efforts to amplify the voice of patients and participants in the undiagnosed and ultra-rare disease communities.
UDN PEER, a group of patients and family members who have participated in the UDN, supports UDN participants and family members by creating and sharing resources, collaborating with UDN researchers, connecting families, and educating the public about the UDN. UDNF is a patient-led organization dedicated to improving access to diagnosis, research, and care for all with undiagnosed and ultra-rare diseases.
Under the new integration, UDN PEER co-chairs will be asked to serve as members of the UDNF Board of Directors. UDNF will provide administrative support to PEER, and together will work on priority objectives outlined by the UDNF’s strategic plan.
The integration of UDN PEER and UDNF is expected to create a stronger sense of community and give UDN participants, and patients and families in the broader community, a greater voice in shaping the future of undiagnosed disease research and care.