Are you completing this form on behalf of someone else (child, spouse, friend)?
Select Yes or No (required) Yes No

Name of Person completing the form

Tell us about the Patient

What is your relationship to the patient?

Patient First Name (required)

Patient Middle Name

Patient Last Name (required)

DOB of person with undiagnosed or ultra -rare disease (required)

Patient Preferred Phone Number (required)

Patient Preferred Email Address (required)

Patient Preferred Method of Contact (required) Email Telephone call Text

Patient Address 1 (required)

Patient Address 2 (apt.suite. etc.)

Patient County (required)

Patient City (required)

Patient State (required)

Patient Zip (required)

Patient Locality Type (required) Rural Suburban Urban Prefer not to answer

Patient Gender (required) Male Female Select an option Non-Binary Transgender Man Transgender Woman Other Prefer not to answer

Patient Marital Status (required) Divorced Domestic Partner Married/Civil Union Separated Single/Never Married Widowed Other Prefer not to answer

Patient Race (required) American Indian Alaska Native Asian Black or African American Middle Eastern or North African Native Hawaiian or Pacific Islander White Other Race Prefer not to answer

Patient Ethnicity (required) Hispanic or Latino Not Hispanic or Latino Prefer not to answer

What is the language you are most comfortable speaking? (required) English Spanish Chinese Tagalog Vietnamese French Arabic Other Prefer not to answer

Other Language

Patient Military Affiliation Caregiver Family Member Military Member or Veteran Military Spouse Veteran Widowed None of the above Prefer not to answer

Have you applied to the UDN or are you a current participant in the UDN? (required) Yes No I'm not sure

If yes, what site have you been assigned to? (required) I have not applied and/or am not a current participant Baylor Children's Hospital Pennsylvania/University of Pennsylvania Duke Harvard Mayo Clinic Miami NIH in Bethesda Seattle Seattle Children's/University of Washington Stanford UCLA University of Alabama Birmingham University of California-Irvine/Children’s Hospital Orange County Utah Vanderbilt Washington University in St. Louis I do not know what site I was assigned to

DO YOU HAVE ANY CURRENT DIAGNOSES?

How can we assist you? (required) Information about the UDN Process Information about my case because I have applied and/or been assigned to a UDN site Information on how to connect with a Patient Navigator Information on available support resources associated with mental health Information on available disability resources Information on available resources other than mental health and disability Information on how to connect with the undiagnosed/ultra-rare patient community Information on genetic testing/counseling Information on other research studies or undiagnosed programs outside the UDN/UDNF

We understand that sharing personal information can feel private. At the Undiagnosed Diseases Network Foundation we collect demographic data to ensure that our services are accessible, equitable, and tailored to the specific needs of our patients. This information helps us identify gaps in care, advocate for policy changes, and measure the impact of our programs. We are committed to protecting your privacy and using your information responsibly. (required) Agree Disagree

How did you hear about the UDNF? (required) Select an option Family/Friend/Colleague Medical Professional Meeting or Conference Other Patient Advocacy Group Prefer not to answer Search Engine (Google) Social media UDN clinical site UDNF email UDNF event UDNF newsletter UDNF website Unknown

Any additional details you would like to share

Are you interested in receiving communications from the UDNF? Yes No