Thank you for registering to participate in the DESSH Clinic this year! If you have not yet completed our registration form, please do so before proceeding. To complete your enrollment, it is necessary that you upload the patient paperwork below. Your registration will not be complete until all forms and reports have been submitted. Returning patients do not need to upload a genetic report or complete a skin biopsy consent form. Clinic participation is limited to 30 patients. We have not yet reached capacity, but if demand exceeds available spots, we will follow up to confirm your enrollment.

Conference-only participants are not required to submit any further documentation.

Downloadable Patient Forms

1 / Media Release

2 / Medical Records Release

3 / Intake Form

4 / Pedigree Form

5 / Skin Biopsy

Forms Submission

Your Name

Your Email

Patient Name

Patient Birthday

Month

Day

Year

New and Returning Patients

Please include the patient's name in the file name for each upload.

Recent Photo of Patient

Media Release

Medical Record Release

Intake Form

Returning patients should only complete and upload this form if changes occurred since the last clinic they attended.

Pedigree Form

Returning patients should only complete and upload this form if changes occurred since the last clinic they attended.

New Patients

Please include the patient's name in the file name for each upload.

Genetic Test Report

Lab report from testing companies like GeneDX or Invitae.

Skin Biopsy Consent

In order for a patient to provide a tissue sample for DESSH research, all guardians must consent for the skin biopsy to be conducted. Not all patients will be asked to provide a skin sample.