Patient Advocacy Groups

DebRA – Dystrophic Epidermolysis Bullosa Research Association of America
This Web site is your entry point to the only national non-profit organization dedicated to both promoting research to find new treatments and a cure for Epidermolysis Bullosa and providing information and support for people with EB and their families.

PXE International
It is the mission of PXE International to initiate, fund and conduct research; provide support for individuals and families affected by pseudoxanthoma elasticum; and provide resources for healthcare professionals.

Morphea Registry
Morphea, also known as localized scleroderma, is a form of scleroderma, a term that literally means “hard skin.” The registry aims to answer the above questions by investigating genes and blood markers associated with morphea.

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