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

Name of Person completing the form (required)

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) Select Value Email Telephone call Text

Patient Address 1 (required)

Patient Address 2 (apt.suite. etc.)

Patient City (required)

Patient State (required) AB - Alberta AK - Alaska AL - Alabama AR - Arkansas AS - American Samoa AZ - Arizona BC - British Columbia CA - California CO - Colorado CT - Connecticut DC - District of Columbia DE - Delaware FL - Florida FM - Federated States of Micronesia GA - Georgia GU - Guam HI - Hawaii IA - Iowa ID - Idaho IL - Illinois IN - Indiana KS - Kansas KY - Kentucky LA - Louisiana MA - Massachusetts MB - Manitoba MD - Maryland ME - Maine MH - Marshall Islands MI - Michigan MN - Minnesota MO - Missouri MP - Northern MarianaIs. MS - Mississippi MT - Montana NB - New Brunswick NC - North Carolina ND - North Dakota NE - Nebraska NH - New Hampshire NJ - New Jersey NL - Newfoundland and Labrador NM - New Mexico NS - Nova Scotia NT - Northwest Territories NU - Nunavut NV - Nevada NY - New York OH - Ohio OK - Oklahoma ON - Ontario OR - Oregon PA - Pennsylvania PE - Prince Edward Island PR - Puerto Rico PW - Palau QC - Quebec RI - Rhode Island SC - South Carolina SD - South Dakota SK - Saskatchewan TN - Tennessee TX - Texas UT - Utah VA - Virginia VI - Virgin Islands VT - Vermont WA - Washington WI - Wisconsin WV - West Virginia WY - Wyoming YT - Yukon

Patient Zip (required)

Patient County (required)

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

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

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

Patient Race (required) Select Value 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) Select Value Hispanic or Latino Not Hispanic or Latino Prefer not to answer

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

Other Language

Patient Military Affiliation Select Value 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) Select Value Yes No I'm not sure

If yes, what site have you been assigned to? Select Value I have not applied and/or am not a current participant Baylor Children's Hospital Pennsylvania/University of Pennsylvania Duke Harvard Indiana Mayo Clinic Mount Sinai 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 Yale I do not know what site I was assigned to

DO YOU HAVE ANY CURRENT DIAGNOSES?

How can we assist you? (required) Select Value Connect with a navigator per UDN Central instructions 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) Select Value Agree Disagree

How did you hear about the UDNF? (required) Select Value 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? (required) Select Value Yes No