Undiagnosed Resource Guide

Here are some resources we thought you might find helpful. Have more questions, reach out to our patient navigators.

Access UDNF Resources and Community

Looking to find social groups to connect with those living undiagnosed?

• Join with other rare and undiagnosed families on UDNF’s Facebook Group.
• Find other families who are part of the Undiagnosed Diseases Network’s Facebook Group (this group is specifically for UDN participants)

Interested in joining a small support group for persons or caregivers going through a diagnostic odyssey?

• Get more information and register to join our Undiagnosed Exchange.

Want to contribute your time, expertise, and experiences to deliver on the UDNF mission to improve support and outcomes for people with rare and undiagnosed conditions?

• Check out and join our Community Councils of volunteers in the areas of Support, Community, Action, Innovation, and Fundraising.

Prepare for Medical Appointments & Organize Your Information

Need guidance to get your records and everything in order for your next appointment?

• Here is a toolkit to help organize your medical records

Access the Undiagnosed Diseases Network (UDN)

Want to learn more about the UDN, a research study focused on delivering answers for complex medical conditions,and learn if it might be right for you.

• Learn more and get information on how to apply to the UDN research network

• Find a UDN site close to you 

• Get more information about genetic testing in the UDN

Learn About Genetics & Genetic Testing

Want to learn about genetic testing, why your doctor might be recommending genetic testing and what it all means?

•  Here is an introduction from the Centers for Disease Control and Prevention: 

Looking to better understand genes, some of the language your care provider might use in relation to genes, and how some genes are passed on from parents to kids? 

• Check out this short introductory video on genetics from the Khan Academy 

Searching for even more understanding about genetics?

• Here is information on DNA, inherited conditions, genetic testing, and how genes can impact your health

Need a definition for a new term related to the genes or want to be more prepared when talking to your doctor about genetic testing?

• Here is a glossary from the National Human Genome Research Institute

Find a Rare Disease Center of Excellence 

Want to find a hospital that specializes in rare diseases?

• Search the NORD Rare Disease Centers of Excellence