Patient's Box

Patient organizations becoming members of the UDNI.

We are excited to announce the opportunity for patient organizations around the world to officially join the Undiagnosed Disease Network International (UDNI) as members!

The UDNI represents one of the most exciting international initiatives for pediatric and adult undiagnosed patients. The UDNI brings together clinicians, researchers, genetic counselors, and other medical professionals from around the globe to collaborate on diagnosing the most difficult and intractable cases.

Like many other initiatives, patient and patient representative participation will be instrumental in ensuring continued success. For example, patient organizations who represent rare and undiagnosed communities can bring patients to the UDNI who may not have found the program otherwise. Patient organizations can build public support for the UDNI, and weigh-in with key decision makers on the importance of the effort. Finally, patient organizations can offer their expertise to the UDNI institutional, clinical, and non-clinical members on how to ensure the effort is patient-focused, patient-friendly, and patient-driven.

To join, a patient organization must be a certified not-for-profit organization, must have a Board of Directors composed of a majority rare and undiagnosed patient advocates, as well as a mission statement that includes advancing access to diagnoses, and must show proven activities of advocating for diagnoses for the undiagnosed community. There are no fees to join, and once a member, patient organizations will have official input on UDNI activities and efforts.

The National Organization for Rare Disorders, one of the original patient organizations to collaborate with the UDNI, is excited to extend this offer to patient organizations internationally. We hope you will join us! To apply, please review these materials in attachment  and send the requisite items to UDNI@iss.it