Community Councils

Community Councils are groups of volunteers making an impact across the UDNF mission – support, engagement, action, fundraising, and innovation. All are welcome to join these councils to add their time, insights, and talents to the UDNF mission. Through the Community Councils, the UDNF will ensure that the organization’s priorities are directly reflective of changing needs in the rare and undiagnosed community and these talented volunteers will enable us to accomplish more together.  

Support Council

The Support Council focuses on the patient experience and the services that meet individual needs. This council provides a feedback loop on patient navigation, identifying ways to expand meaningful resources, and strengthen programs that offer direct support to individuals and families on their diagnostic journey.

The Support Council meets on the 4th Tuesday of every month at 4:00 p.m. Eastern. Join the Support Council Monthly Meetings – Register Today

Engagement Council

The Engagement Council works to identify how best to build connection across the undiagnosed community. Members help shape outreach efforts, design community-building activities, and create pathways for more people to participate and feel a sense of belonging.

The Engagement Council meets on the 2nd Thursday of every month at 1:30 p.m. Eastern. Join the Engagement Council Monthly Meetings – Register Today

Action Council

The Action Council mobilizes the community to raise awareness and drive change. This group identifies and rallies advocates to realize policy and funding opportunities to improve support and outcomes for people living with rare and undiagnosed diseases. Additionally, this group will ensure that the voice of the undiagnosed is heard through awareness and community-organizing activities. 

The Action Council meets on the 4th Friday of every month at 11:00 a.m. Eastern. Join the Action Council Monthly Meetings – Register Today

Fundraising Council

The Fundraising Council explores creative, accessible ways to support the financial sustainability of the UDNF. Members brainstorm and implement fundraising efforts that grow our programs and expand our capacity to serve the rare and undiagnosed community. .

The Fundraising Council meets on the first Monday of every month at 12:00 p.m. Eastern. Join the Fundraising Council Monthly Meetings – Register Today

Innovation Council

The Innovation Council will ensure patient-driven research thrives to deliver answers and improved outcomes for people living with rare and undiagnosed diseases. We envision a world where everyone in these communities has access to research that will lead to a diagnosis and treatment for their condition. Members will identify research priorities important to the rare and undiagnosed disease community and work with researchers, institutions, and companies to pursue opportunities to advance patient-centered innovation. 

The Innovation Council meets on the second Tuesday of every month at 3:00 p.m. Eastern. Join the Innovation Council Monthly Meetings – Register Today