This section of the website includes pages about individuals who participate* in the UDN. Ideally these pages will help to find and connect others with the same or similar conditions.
These are some of the UDN study participants you will see when you follow the links on the right. We are looking for similar patients and ask that you contact us if you know someone.The participant pages include the following information:

  • Genetic changes
  • Symptoms
  • Medical history
  • Treatments, procedures, and medications
  • Gender, race, and ethnicity
  • Photographs and/or videos

*Sharing information on this website is not a requirement of UDN participation. Only descriptions of participants who give explicit consent will appear here.