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PeDRA

Pediatric Dermatology Research Alliance

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        • Parents, advocates, and patients over the age of 18 with a direct connection or significant interest in childhood skin disease or pediatric dermatology research are encouraged to join the PeDRA network for free as Community Members.

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        • Save the Date! The 2023 PeDRA Annual Conference will be held November 9-11, 2023 at the Westin Buckhead Atlanta in Atlanta, GA.

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        • 2022 marked PeDRA’s 10th year of pursuing the vision of changing lives and healing children with skin disease through collaboration and discovery. Visit our 10th Anniversary Page to learn more about the origin of PeDRA and the many accomplishments during the first ten years!

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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.

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/

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