02 Jul Community Councils Update
July 2, 2026
Our volunteer-driven Community Councils have been busy. Check out their incredible progress.
Support Council Update
Thanks to an initiative from the Support Council, patients and families can nominate the medical providers who have made a real difference in their care. The highest-scoring nominees will be honored by the UDNF.
Nominate your favorite clinician as an Undiagnosed Champion: click here
Every undiagnosed journey is shaped by the people who show up — the doctors, nurses, and specialists who listen, advocate, and refuse to give up on a diagnosis. The Undiagnosed Champion Nomination gives our community a way to say thank you, and to make sure these providers get the recognition they’ve earned.
Coming Soon – an Undiagnosed Documentary Viewing and Discussion Series Stories have power, especially for a community that often feels unseen. This series will feature documentaries exploring the realities of rare, ultra-rare, and undiagnosed conditions, giving voice to experiences that don’t often make it to film.
After each screening, we will host a panel and discussion group where viewers can reflect, share their own stories, and connect with others who understand. These conversations are as central to the series as the films themselves, turning a viewing event into a moment of community and connection.
Action Council Update
The Action Council is working to improve communication standards between patients and UDN sites, ensuring families know what to expect and how to advocate for themselves at every step. This work is expanding into something larger: an Undiagnosed Patient Bill of Rights, a foundational document that will articulate the rights every undiagnosed patient deserves throughout their diagnostic journey, from how they are communicated with, to how they are involved in decisions about their own care. Stay tuned!
Engagement Council Update
The engagement council has been hard at work developing an app to connect patients and families with similar symptoms to share knowledge and experiences.
Built by patients and families, for patients and families, this app will be designed around a simple idea: when your diagnosis does not have a name yet, often the people who understand you best are often other patients navigating the same uncertainty.
When completed and made available, users will be able to enter their symptoms and connect with others in the UDNF community who share similar experiences. These connections can help patients:
- Feel less alone in their journey
- Learn what tests or specialists others have pursued
- Discover questions worth raising at their next appointment
- Find their people — even when a diagnosis does not yet exist