Advocacy & Support Groups
Whether you are struggling with a recent diagnosis or facing the daily challenges of a disease, there are organizations and resources that can help! PeDRA proudly works alongside patient advocacy organizations to ensure the patient voice is reflected in the research we do. Below is a list of organizations serving pediatric patients with dermatology diseases.
- AIM at Melanoma
- AIM at Skin Cancer
- Children’s Skin Disease Foundation
- Cutis Marmorata Telangiectatica Congenita (CMTC) Alliance
- Dystrophic Epidermolysis Bullosa Association of America (DEBRA)
- Epidermolysis Bullosa Medical Research Foundation (EBMRF)
- Epidermolysis Bullosa Research Partnership (EBRP)
- Foundation for Ichthyosis and Related Skin Types (FIRST)
- Global Parents for Eczema Research
- Gorlin Syndrome Alliance
- Histiocytosis Association
- HS Connect
- HS Foundation
- International Association of Dermatology Patient Organizations (IADPO)
- International Hyperhidrosis Society
- International Pemphigus & Pemphigoid Foundation
- National Alopecia Areata Foundation (NAAF)
- National Eczema Association (NEA)
- National Foundation for Ectodermal Dysplasia (NFED)
- Nevus Outreach
- National Psoriasis Foundation (NPF)
- National Scleroderma Foundation
- Pachyonychia Congenita (PC) Project
- PHACE Syndrome Community
- Skin of Color Society
- The Sturge-Weber Foundation
- The American Vitiligo Research Foundation
- The Association of Hidradenitis Suppurativa and Inflammatory Diseases (AHSID)
- The Xeroderma Pigmentosum (XP) Society
- Vitiligo Support International
Other Resources
Learn more about tips you can use when talking to your children about cancer.
Skin-vincible: A Story of a Superstar with Ichthyosis is a children’s book by PeDRA members Dr. Andrea Rustad and Dr. Amy Paller, sharing the inspiring journey of a young hero with ichthyosis.
The charge of the Pediatric Dermatology Research Alliance Patient Advisory Committee (PtAC) is to inject the perspectives and priorities of patients and parents into PeDRA’s research activities, and to identify high-priority, cross-disease studies to be pursued by PeDRA investigators.
At PeDRA, we’re committed to supporting patients and families affected by childhood skin diseases. Explore our collection of resources, including educational materials, clinical trials, research studies, and community connections, to stay informed and empowered on your journey.