FamilySilhouetteCompletion of this form will add you to the Pitt Hopkins Research Foundation (PHRF) database.

Registering with the Pitt Hopkins Research Foundation will help keep you up-to-date on the latest information regarding PTHS. You can choose to receive our newsletters, conference announcements and special mailings. Our database is not shared with external organizations. If you so choose, you may also allow us to share contact information with local families in your area, and send you info on research studies or Pitt Hopkins clinics closest to your home.

Information security — The Pitt Hopkins Research Foundation respects your privacy and is committed to protecting it at all times. The PHRF implements security measures to protect against unauthorized access of this information. Access to the information is restricted and we will only share information in the manner that you indicated in the registration. You may change the way in which your information is shared at anytime by revisiting your emailed link to access your registration.

After registering, you will receive a confirmation email which includes a private link allowing you to edit your registration at any time. You may also update your registration at a later date with new information using the link at the bottom of this page.  

On this form, the term “Child” is used to shorten the wording of registration questions–an individual with Pitt Hopkins of any age may be registered.  An ” * ” indicates a required question.

If you have additional child(ren) diagnosed with Pitt Hopkins syndrome, please fill out this registration form again for each additional affected child.  

Please email us at management@pitthopkins.org with any questions.  Thank you.