A group of undiagnosed and ultra-rare disease patients and their family members, medical providers and advocacy partners recently announced the launch of the Undiagnosed Diseases Network Foundation (UDNF) and the hiring of the group’s inaugural CEO. The organization aims to improve access to diagnosis, research and care for all with undiagnosed and ultra-rare diseases.
Amy Gray, a longtime Wellington community member and nationally recognized rare disease advocate, will oversee the UDNF as its first CEO. Gray brings more than 20 years of experience in rare-disease-focused nonprofits. As the former CEO of the Charcot-Marie-Tooth Association, she is skilled at uniting patients, families, scientists, clinicians and researchers to advance a shared mission of improving the lives of rare disease patients. Gray has also held executive leadership roles at the Parkinson’s Foundation, the Crohn’s & Colitis Foundation and the Muscular Dystrophy Association. The UDNF’s board of directors is delighted to welcome Gray as a leading force in achieving the best outcomes for patients.
The UDNF was conceived by patients and families enrolled in the Undiagnosed Diseases Network (UDN), a medical study that has set the international standard for researching undiagnosed diseases. The UDNF and UDN will partner together to pursue clinical and research solutions for the well-being of undiagnosed and ultra-rare disease patients. The UDNF will serve both pediatric and adult patients through patient navigation, community education programs and collaboration with the UDN.
“The foundation will help ensure that patients have access not only to resources and community support but also to the research and clinical care they need — from the very onset of their symptoms, through their diagnostic journey and, eventually, to treatment,” said UDN principal investigator Dr. Isaac Kohane, chair of the Department of Bioinformatics at Harvard Medical School.
Dr. Meghan Halley, senior research scholar in the Center for Biomedical Ethics at Stanford University, mother to a son with an undiagnosed disease and president of the UDNF Board of Directors, explained the importance of the UDNF. “By centering those left behind by healthcare — especially undiagnosed patients who often struggle to navigate the healthcare system — we can develop new approaches to comprehensive patient care that benefit everyone,” she said.
UDN participants and caregivers have already demonstrated the power of the undiagnosed community. Thanks to the tireless efforts of undiagnosed patients and family members, funding for the UDN will continue through 2023. On Dec. 22, 2022, Congress passed a spending bill for 2023 that includes $18 million to fund the UDN. While this success secures the immediate future of the UDN, advocacy efforts must continue to guarantee long-term sustainability.
The Undiagnosed Diseases Network Foundation is a patient-led nonprofit organization founded in 2023 committed to improving access to diagnosis, research and care for all with undiagnosed diseases. The UDNF aims to foster collaboration among patients, clinicians and scientists to enhance the quality of life of undiagnosed and ultra-rare disease patients and their families. For more information, visit www.udnf.org.
