What to do when doctor can’t diagnose you?

With more than 25 million Americans living with undiagnosed and rare diseases, and the average rare disease diagnostic journey lasting 5-7 years, now is the time to get involved. Find out more about Undiagnosed Rare Disease Registry.

The undiagnosed rare disease registry is an opportunity for individuals and caregivers to advance understanding and change the future of rare disease by sharing their experiences.

Benefits of participating:

  • You will provide valuable insights that can influence health policy matters and education for medical professionals.
  • As a participant, you will be able to view study results and learn from others.
  • As a community, we will learn and become more effective in advocating for the needs of all people along their rare disease journey.

Get involved with Undiagnosed disease research

If you would like to learn more, please reach out to [email protected].