Registry

Who can join the registry?

Anyone with a diagnosis of Proteus syndrome can be part of the registry.

Other details:

The Proteus Syndrome Foundation Contact Registry is not the same as our newsletter mailing list.  You must opt-in to our Contact Registry by completing the form below.

We will not use this list for marketing or fundraising. 

If our policy about acceptable use of our contact registry ever changes, you will be notified. You may opt-out of the contact registry at any time by emailing us at proteussyndromefdn@gmail.com

See complete details | Phase 1 Clinical Trail Patient Enrollment Has Begun

Person With Proteus Syndrome






Person To Be Contacted






The Proteus Syndrome Foundation Contact Registry is not the same as our newsletter mailing list. You must opt-in to our Contact Registry by completing the form below.

We will not use this list for marketing or fundraising.

If our policy about acceptable use of our contact registry ever changes, you will be notified. You may opt-out of the contact registry at any time by emailing us at proteussyndromefdn@gmail.com

Many thanks to the Clove Foundation for allowing us to use their contact registry design as a template for our contact registry.



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