The Undiagnosed Diseases Network Foundation (UDNF) Awarded $20,000 Grant From The Columbus Foundation
UDNF Receives Grant to Enhance Patient Advocacy Initiatives
WASHINGTON, D.C., UNITED STATES, July 11, 2024 /EINPresswire.com/ -- The Undiagnosed Diseases Network Foundation1 (UDNF), a patient-led nonprofit organization dedicated to improving access to diagnosis, research, and care for people with undiagnosed and ultra-rare diseases, has been awarded a $20,000 grant from the Stephen H. Barmakian Family Foundation of The Columbus Foundation3.
The grant will support an undiagnosed session at an existing rare disease conference and two new undiagnosed and ultra-rare disease patient education meetings in 2024. These initiatives aim to enhance understanding of undiagnosed and ultra-rare conditions by providing platforms for education, discussion, and knowledge exchange among patients, caregivers, and healthcare professionals.
“We are profoundly grateful to the Stephen H. Barmakian Family Foundation of The Columbus Foundation for its trust and support,” said Amy Gray, CEO of the UDNF. “The additional funding for educational programs will help us continue to bring hope and resources to patients and families searching for answers and a diagnosis. The power of knowledge drives us forward to aid those in their diagnostic journey as every patient deserves a diagnosis, and every disease deserves a name.”
The grant, made possible by the generosity of the late Stephen H. Barmakian, supports UDNF's unwavering commitment to addressing the critical unmet needs of undiagnosed patients and their families and the need for additional patient education. This funding will enhance the organization's ability to provide education, bringing them closer to their mission of improving outcomes for patients with undiagnosed and life-altering medical conditions.
About Undiagnosed Diseases Network Foundation
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, please visit www.udnf.org2.
About Undiagnosed and Ultra-rare Diseases
The search for a diagnosis for an undiagnosed or ultra-rare disease can be long and difficult. Patients may go from doctor to doctor without answers, and they may face treatment delays, lack of access to specialists, invasive and costly tests, emotional distress, and longing for community. There are more than 10,000 known rare diseases that affect about 1 in 10 people (or 30 million people) in the U.S. Led by undiagnosed and ultra-rare patients and their families, the UDNF offers hope for healthcare that embraces the unknown and pursues clinical and research solutions for patient wellbeing.
About The Columbus Foundation
The Columbus Foundation, one of the top 10 community foundations in the United States, serves thousands of individuals, families, and businesses that have created unique funds and planned gifts to make a difference in the lives of others through the most effective philanthropy possible.
Glenn Sliver
FINN Partners
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glenn.silver@finnpartners.com
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1 https://udnf.org/about-udnf/
2 https://udnf.org/
3 https://columbusfoundation.org/
