The Undiagnosed Diseases Network (UDN) is a research study funded by the National Institutes of Health. Its purpose is to bring together clinical and research experts from across the United States to solve the most challenging medical mysteries using advanced technologies.

Through this study, we hope to both help individual patients and families living with the burden of undiagnosed diseases and contribute to the understanding of how the human body works. Requirements for Online Application

If you decide to apply for this study, you will need to answer a series of brief questions through our application portal, the UDN Gateway (link below), related to the following:

• Contact information
• Demographic information
• Healthcare provider information (name, address, phone, fax, email)
• Brief medical history questions
• Previous evaluations
• Travel limitations

A study recommendation letter from a health care provider (for example, a specialist, primary care physician, nurse practitioner, or genetic counselor) is also necessary to submit the online application to the UDN. The letter must be written in English, signed, and on letterhead. A relative cannot write a letter. The study recommendation letter must include:

• A summary of the applicant’s medical problems
• Date when symptoms were first noticed
• For pediatric patients: prenatal and birth history
• Previous diagnoses
• History of evaluations and testing
• History of treatments and medications
• Current medications
• Family history
• Healthcare provider’s diagnostic impressions
• 
  

We have prepared a sheet of information for you to share with your provider, as well as a set of example study recommendation letters.

Please provide us with a 1-page patient narrative telling us your story from your perspective. We will have received the letter from your referring provider, but the narrative may help the UDN understand your medical history directly from you. Sometimes photos help the UDN team better understand the symptoms the applicant is experiencing. If you would like to provide a narrative and/or photo, please upload it to the application.

Help Desk

Phone: 1-844-746-4836

email: UDNConnect.org

For additional resources and more information about Visible you can find us here:

Web: ⁠⁠⁠https://visiblenationaltrust.com/⁠⁠⁠

Podcast (ABC's of Disability Planning) - ⁠⁠⁠https://anchor.fm/abcs-disability-planning⁠⁠⁠

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