EUF Patient Registry

The EU Patient Registry Form 

If you are interested in enrolling in the EU Patient Registry, please complete the brief screening form below and click submit. Please note that this registry is patient-reported.  

If you are a healthcare provider and wish to refer your patients, please refer them to this form. 

If the participant is over the age of 18, and able to enroll themself, they must complete the form below.


If the participant is over the age of 18, and not cognitively able to enroll, and you are the legally authorized representative, you may submit the form below on their behalf.


If you are a parent of an individual under the age of 18, you may enroll the participant.

Did a Licensed Physician Confirm the Diagnosis? *

Yes, I have been diagnosed by a licensed physician.

No, I have not been diagnosed by a licensed physician (if so, skip the next question).

I don't know how to go about getting a diagnosis (if so, skip the next question).

Are you willing to participate in any Research Studies and/or clinical trials related to your rare condition? *

Yes, I give EDSers United permission to contact me about participation in future research studies pertaining to my specific condition(s).

No, I am submitting my information to be de-identified and only give permission for my information to be utilized for statistical purposes and data development only.

The EDSers United (EU) Patient Registry

Before submitting this form, please confirm that all contact information (email address, phone number) is correct.

If you have not been diagnosed yet, please submit that you are undiagnosed. We cannot officially count the participant statistically if they have not received an official diagnosis from a licensed health care professional. 

We would like to thank you for taking the initiative to assist the EDSers United in generating up-to-date statistical information. Your participation brings us one step closer to understanding the prevalence of EDS. 

If you have any questions about the EUF Patient Registry, please contact us by emailing rareadvocacymovement@gmail.com.