Undiagnosed Diseases Network Foundation

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

While each diagnostic journey is unique - there is so much shared in the experience of living without a diagnosis. ➡️Lis...
09/23/2026

While each diagnostic journey is unique - there is so much shared in the experience of living without a diagnosis.

➡️Listen to Brendan's Undiagnosed Diseases Network (UDN) story featured on a recent episode of : https://open.spotify.com/episode/2t19nh30i566QBzo3e6iYY?si=9X_ZST16QRGE82_cYK8RZQ

➡️Join the UDNF community at udnf.org

➡️Share your own story - to inspire others and increase awareness of undiagnosed diseases

Add YOUR voice:The Undiagnosed Disease Network Foundation and GeneDx want to hear from you! We are inviting caregivers t...
09/22/2026

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

09/21/2026

What does a teammate for your diagnostic journey actually do?

Five things Ari handles in undiagnosed care:
🗣️ Tracks symptoms from a voice note and spots patterns
📂 Turns scattered records into plain answers
🛡️ Drafts and files insurance appeals
🩺 Preps you for appointments
🎁 Finds benefits built for our community

Early access for our families. Your feedback shapes it.

🎥 Links for the demo and to register in bio!

Big news for the undiagnosed community. 🎉UDNF has partnered with Citizen Health to bring every family Ari, a personal AI...
09/08/2026

Big news for the undiagnosed community. 🎉

UDNF has partnered with Citizen Health to bring every family Ari, a personal AI teammate for their diagnostic journey: https://www.citizen.health/join/udnf

Citizen Health is built for rare disease. Through this partnership, our families get early access to a teammate that helps carry the daily work:
📂 Pulls your records into one place you own
📱 Tracks symptoms and spots patterns
🛡️ Drafts and files insurance appeals
🩺 Preps you for appointments

Free for our families, including free premium through end of year. Setup takes about five minutes.

👉 Link in bio

Good news for the undiagnosed community - new teams have been funded and charged to make progress on ending the rare dis...
09/04/2026

Good news for the undiagnosed community - new teams have been funded and charged to make progress on ending the rare diseases diagnostic odyssey.

ARPA-H announces performers for their RAPID (Rare Disease AI/ML for Precision Integrated Diagnostics) Program - and the UDNF is part of the team!

As a Patient Experience Partner, UDNF will bring the voice and experiences of undiagnosed patients and families to the researchers and innovators working to solve the rare disease diagnostic challenge.

We will want to hear from YOU. Stay tuned to add your voice to this groundbreaking project.

https://udnf.org/undiagnosed-diseases-network-foundation-named-patient-experience-partner-for-arpa-hs-groundbreaking-rapid-program/

The awareness gap is real. The need is urgent.We are committed to representing the too often overlooked undiagnosed comm...
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!

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

Address

1012 14th Street NW Ste 500
Washington D.C., DC
20005

Opening Hours

Monday 9am - 5pm
Tuesday 9am - 5pm
Wednesday 9am - 5pm
Thursday 9am - 5pm
Friday 9am - 5pm

Telephone

+12025994465

Website

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