Meet Our New CEO

Welcoming Danielle Carnival, Ph.D., as the UDNF’s New CEO

We’re excited to welcome Danielle Carnival, Ph.D., as our new CEO of the UDNF! She brings not only deep expertise in science and policy, but a heartfelt commitment to listening, learning, and working with the rare and undiagnosed communities.

Read her message to the community:

To the UDNF, ultra-rare, rare, and undiagnosed communities,

I am thrilled to be leading the UDNF mission to improve support and outcomes for people living without a diagnosis. My intention is to learn from your experiences, listen to your priorities, and work with you to drive the needed changes that could deliver more answers.

After completing a Ph.D. in Neuroscience, I have spent my career translating that knowledge into policy and movements that deliver impact. I have led national initiatives in health, including a White House mission to end cancer as we know it and a patient-driven movement for support, action, and cures within the ALS community.

I am inspired by the people I have already met at the UDNF. My vision is that we are home to community, support, innovation, and action for people navigating the uncertainty of rare and undiagnosed conditions. I look forward to working with many affected individuals and families – together, I truly believe we can deliver on the hope for connection, answers, and improved outcomes.

Sincerely, 

Danielle Carnival