10000
+ identified rare diseases
85%
of rare diseases affect less than one in a million
718
patients diagnosed through the UDN
50
new diseases identified by the UDN
About UDNF
Overview
The UDNF aims to foster collaboration among patients, clinicians, and scientists to enhance the quality of life of undiagnosed and ultra-rare disease patients. We do this by mitigating barriers to equity and access in healthcare; setting standards for patient management; and bridging diagnosis and therapeutics as well as research and clinical care in undiagnosed patients and patients with ultra-rare diseases.
Led by and for patients and their families, the UDNF will become the central resource for the undiagnosed community. From when a patient first experiences unexplained symptoms to their 10-year anniversary of effective treatment, the UDNF will provide the resources, community, and research they need to live their best lives. No patient or family will have to traverse the unknown alone.
We envision a learning healthcare system where researchers, clinicians, and patients work together to advance individual and community wellbeing. By leveraging advancements in science, technology, and service delivery, we aim to continuously improve health quality and efficiency for undiagnosed patients.
Mission
Our mission is to improve access to diagnosis, research, and care for all individuals with undiagnosed and ultra-rare conditions.
Vision
Our vision is healthcare that embraces the unknown and pursues clinical and research solutions for patient wellbeing.
Values
Compassion, Empathy, and Respect
Social Justice
Patient & Family Centered
Integrity
Innovation, Discovery, and Scaleability
Partnerships and Collaboration