Hi @clutch, There are a couple of members that have discussed and or applied to the Undiagnosed Disease Network (UDN) like @upnort and @keithwalker. Perhaps they would be wiling to share what they have gone through. You will see that your post was moved to a conversation about UDN.

Here are some Frequently Asked Questions About the Undiagnosed Diseases Network
What is the Undiagnosed Diseases Network (UDN)?
The UDN is a research study funded by the National Institutes of Health Common Fund. The UDN is made up of clinical and research centers across the United States working to improve diagnosis and care of patients with undiagnosed diseases.

What is the purpose of the UDN?
The UDN has two main goals:
1. To provide answers for patients and families affected by mysterious conditions, and
2. To learn more about rare and common diseases.

What is unique about the UDN?
The UDN is trying to solve the most challenging medical mysteries by:
– Bridging the gap between clinical care and research.
– Using genetic data to try to find diagnoses.
– Working with researchers to figure out how diseases affect the body, which may lead to treatments.
– Training other doctors, nurses, genetic counselors, and scientists to use this new approach.

What is an undiagnosed disease?
An undiagnosed disease is a medical condition without a known cause despite a lot of evaluation.

What is a rare disease?
A rare disease is a disease that affects fewer than 200,000 people in the United States. There are so many separate rare diseases, that overall 1 in 10 people have a rare disease.

Who is eligible for the UDN study?
Ideal applicants to the UDN include individuals with:
1. One or more objective findings pertinent to the phenotype for which a UDN application was submitted.
2. No diagnosis despite evaluation by at least two specialists who assessed the patient for the objective finding(s).
3. Agreement for the storage and sharing of information and biomaterials, in an identified fashion amongst the UDN centers, and in a de-identified fashion to research sites beyond the network.
4. Applicants unable to consent can be enrolled.

Applicants who are unlikely to be accepted include individuals with:
1. Reported symptoms with no relevant objective findings.
2. A diagnosis explaining objective findings.
3. A diagnosis suggested on record review.
4. Unwillingness to share data.

Applying to the UDN
How do I apply to the UDN study?
Before applying to the UDN, it is important to discuss the study with a health care provider (for example, specialist, primary care physician, nurse practitioner, or genetic counselor). If you want to submit the application online, you will need an email address and access to the Internet. If you do not have an email address and access to the Internet, you can request a paper application. You will also need to ask your health care provider to write a study recommendation 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 tests
– History of treatments and medications
– Current medications
– Family history
– Health care provider’s diagnostic impressions

Once you have the study recommendation letter, you can fill out an online application through our website, which we call the UDN Gateway.

You will upload the study recommendation letter directly to this website. You will be provided the opportunity to upload a 1-page patient narrative telling us your story from your perspective and a photo. It should take less than 20 minutes to complete the online application.

When the UDN has received your application, you will receive a confirmation email. The UDN will let you know if more information is needed before your application can be reviewed.
https://undiagnosed.hms.harvard.edu/about-us/faqs/
@clutch, can you share what symptoms you are looking to have addressed with the UDN?