The specific goals of the UDNI are to:
(1) Improve the level of diagnosis and care for patients with undiagnosed diseases through the development of common protocols designed by a large community of investigators.
(2) Facilitate research into the etiology of undiagnosed diseases, by collecting and sharing standardized, high-quality clinical and laboratory data, including genotyping, phenotyping, and documentation of environmental exposures.
(3) Create an integrated and collaborative community across multiple clinical sites and among laboratory and clinical investigators prepared to investigate the pathophysiology of these newly recognized and rare diseases.
The UDNI is open to Patient Organizations that adhere to the criteria for participation described below.
Requirements for Online Application
Membership will be open to patient organizations from all countries who serve undiagnosed disease patients. To qualify, patient organizations must meet the following qualifications:
Once members, patient organizations within the UDNI shall:
An application form should include the organization’s mission statement with included diagnosis-related goals, proof of non-profit status, list of board of directors with their respective affiliations, and 3-5 sentences on organizational activities that serve the undiagnosed cause.
Applications will be reviewed by the UDNI Board Committee on Membership. Additional membership criteria and structures may be created as the UDNI develops.