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.
Organizations serving pediatric patients with dermatology diseases
AIM at Melanoma
https://www.aimatmelanoma.org/
Children’s Skin Disease Foundation
https://www.csdf.org/
Cutis Marmorata Telangiectatica Congenita (CMTC) Alliance
https://www.cmtcalliance.org/
Dystrophic Epidermolysis Bullosa Association of America (DEBRA)
http://www.debra.org
Epidermolysis Bullosa Medical Research Foundation (EBMRF)
https://ebmrf.org/
Epidermolysis Bullosa Research Partnership (EBRP)
https://www.ebresearch.org/
Foundation for Ichthyosis and Related Skin Types (FIRST)
http://www.firstskinfoundation.org
Global Parents for Eczema Research
https://www.parentsforeczemaresearch.com/
Gorlin Syndrome Alliance
http://www.gorlinsyndrome.org
Histiocytosis Association
https://histio.org/
HS Connect
https://www.hsconnect.org/
HS Foundation
https://www.hs-foundation.org/
International Association of Dermatology Patient Organizations (IADPO)
https://globalskin.org/
International Hyperhidrosis Society
https://sweathelp.org
International Pemphigus & Pemphigoid Foundation
http://www.pemphigus.org
National Alopecia Areata Foundation (NAAF)
http://www.naaf.org
National Eczema Association (NEA)
http://nationaleczema.org
National Foundation for Ectodermal Dysplasia (NFED)
http://nfed.org
National Organization of Vascular Anomalies (NOVA)
http://www.novanews.org
Nevus Outreach
http://www.nevus.org
National Psoriasis Foundation (NPF)
https://www.psoriasis.org
National Scleroderma Foundation
https://www.scleroderma.org/
Pachyonychia Congenita (PC) Project
http://www.pachyonychia.org
PHACE Syndrome Community
http://www.phacesyndromecommunity.org/
The Sturge-Weber Foundation
https://sturge-weber.org/
The American Vitiligo Research Foundation
http://avrf.org
The Xeroderma Pigmentosum (XP) Society
http://www.xps.org
Vitiligo Support International
https://vitiligosupport.org/
Other Resources
Talking to Children About Cancer from Mesothelioma Hope
https://www.mesotheliomahope.com/resources/children/