Undiagnosed Diseases Network Foundation

08/26/2026

The awareness gap is real. The need is urgent.

We are committed to representing the too often overlooked undiagnosed community! Today we're releasing new polling data that shows where Americans stand — and what it means for the millions still searching for answers. 🧬

Stay tuned for more!

07/22/2026

🌟 Looking for a way to make a difference for the undiagnosed community - Join one of our Community Councils 🌟

Stay connected and get involved! UDNF’s councils play a vital role in shaping programs, driving awareness, and supporting the rare and undiagnosed community.

Upcoming meetings:

Support Council: 4th Tuesday of every month at 4:00 p.m. Eastern

Engagement Council: 2nd Thursday of every month at 1:30 p.m. Eastern

Action Council: 4th Friday of every month at 11:00 a.m. Eastern

Innovation Council: 2nd Tuesday of every month at 3:00 p.m. Eastern

Learn more and join here: https://udnf.org/about-udnf/community-councils/

07/21/2026

New virtual support group starting August 2026. 💜

Reach out to [email protected] for more information and to join!

Finding your way through medical uncertainty can feel overwhelming, isolating, and exhausting. The Undiagnosed Exchange was created to offer a safe space where people walking this path can learn, share, and connect with others who truly understand.

Meeting virtually twice a month, the Undiagnosed Exchange is open to anyone who is currently undiagnosed or is a caregiver for an undiagnosed individual and seeking community, tools, and understanding.

Find additional resources and community at udnf.org/undiagnosed-community/.

07/10/2026

Add YOUR voice:

The Undiagnosed Disease Network Foundation and GeneDx want to hear from you! We are inviting caregivers to consider a short online research survey. You are eligible if you have looked for diagnostic answers for your child. The purpose is to understand if the process of trying to find answers for your child affected your work or daily activities. What we learn may help to improve care pathways in the future. This survey is completely voluntary. Your responses are anonymous, and no identifying information will be collected. Choosing not to participate will not affect your child’s care or relationship with GeneDx in any way.

To learn more, visit: https://forms.office.com/r/0wGvW3ER01

GeneDx

07/01/2026

Add YOUR voice:

The Undiagnosed Disease Network Foundation and GeneDx want to hear from you! We are inviting caregivers to consider a short online research survey. You are eligible if you have looked for diagnostic answers for your child. The purpose is to understand if the process of trying to find answers for your child affected your work or daily activities. What we learn may help to improve care pathways in the future. This survey is completely voluntary. Your responses are anonymous, and no identifying information will be collected. Choosing not to participate will not affect your child’s care or relationship with GeneDx in any way.

To learn more, visit: https://forms.office.com/r/0wGvW3ER01

GeneDx

Improving access to diagnosis, research, and care for all with undiagnosed and ultra-rare conditions.

06/03/2026

You have the chance to change the future for the 25 million Americans living with rare, undiagnosed diseases. We are looking for 50 champions to lead fundraising efforts as part of our "Undiagnosed. United. Unstoppable." campaign.

Join the 14 people who already jumped in and are off and fundraising or make a donation. https://givebutter.com/UDNF2026

When you are living undiagnosed it can be hard to find community. However, while the symptoms vary widely, the journeys overlap. Through the UDNF, patients and their families are able to connect with others who not only see but understand their experiences. This validation has dramatically changed lives. The UDNF made that happen.

06/02/2026

Get ready for hot, sunny days ahead with a UDNF hat!

🛍 All proceeds support the Undiagnosed Diseases Network Foundation to realize a world where no family with an undiagnosed or ultra-rare condition has to fight alone for a diagnosis, research, treatment or support.

https://www.bonfire.com/store/udnf/

06/01/2026

🎓 Graduation season is here — a time when families celebrate their kids taking their next big step.

But for millions of families, there's a different kind of milestone they're desperately waiting for: a diagnosis.

Without answers, life's next steps are put on hold. Dreams get deferred. Futures feel uncertain.

This season, help us make sure every family gets their moment. Because a diagnosis isn't just a medical term. It's a door opening. It's a future returning.

Donate today and help more families move forward. 💛 https://givebutter.com/UDNF2026/