top of page

American Skin Association
https://www.americanskin.org/

Coalition of Skin Diseases
https://www.coalitionofskindiseases.org/

Coalition of Patient Advocacy Groups
https://www.rarediseasesnetwork.org/cpag/


AIDS/HIV
AIDS/HIV Nightline
Information referrals 7 days 5pm-5am (Pacific Standard Time)
San Francisco: 415-434-AIDS (2437)
Northern California: 800-367-AIDS (2437)
Spanish: 415-989-5212 & 1-800-303-AIDS (2437)
Deaf/Hearing Impaired: 415-781-2228

Gay Men’s Health Crisis
https://www.gmhc.org/

San Francisco AIDS Foundation
https://www.sfaf.org/

Alopecia Areata
National Alopecia Areata Foundation
https://www.naaf.org

Ataxia
National Ataxia Foundation
https://www.ataxia.org


Basal Cell Carcinoma Nevus Syndrome/Gorlin’s Syndrome
Basal Cell Carcinoma Nevus Syndrome Life Support Network
https://www.gorlinsyndrome.org/

Behcet’s Disease
American Behcet’s Disease Association
https://www.behcets.com/


Cancer
American Cancer Society
https://www.cancer.org

Cutaneous Lymphoma
Cutaneous Lymphoma Foundation
https://www.clfoundation.org/


Dermatitis Herpetiformis
Celiac Disease Foundation
https://celiac.org/celiac-disease/dermatitis-herpetiformis/

Celiac Support Association
https://www.csaceliacs.org/dermatitis_herpetiformis.jsp

National Foundation for Celiac Awareness
https://www.celiaccentral.org/newlydiagnosed/Related-Conditions/Dermatitis-Herpetiformis/38/

Dermatomyositis
The Myositis Association
https://www.myositis.org/


Ectodermal Dysplasias
National Foundation for Ectodermal Dysplasias
https://www.nfed.org/

Eczema
National Eczema Association
https://www.nationaleczema.org/

Ehlers-Danlos Syndrome
Ehlers-Danlos Syndrome Foundation

https://www.ehlers-danlos.com/

Epidermolysis Bullosa
DebRA (Dystrophic Epidermolysis Bullosa Research Association of America)
https://www.debra.org/


Genetic Disease
Genetic Alliance
https://www.geneticalliance.org/


Hemochromatosis
Iron Disorders Institute
https://www.hemochromatosis.org/

Herpes
American Sexual Health Association
https://www.ashasexualhealth.org/stdsstis/herpes/

Histiocytosis
Histiocytosis Association
https://www.histio.org/

Human Papillomavirus
American Sexual Health Association
https://www.ashasexualhealth.org/stdsstis/hpv/


Ichthyosis
Foundation for Ichthyosis and Related Skin Types, Inc. (FIRST)
https://www.firstskinfoundation.org/

Incontinentia Pigmenti
Incontinentia Pigmenti International Foundation
https://www.ipif.org/


Klippel-Trenaunay
Klippel-Trenaunay Support Group
https://www.k-t.org/


Leprosy (Hansen’s Disease)
Damien-Dutton Society for Leprosy Aid, Inc.
https://www.damien-duttonleprosysociety.org/

International Leprosy Association
https://www.leprosy-ila.org/do.php/Home

National Hansen’s Disease (Leprosy) Program
https://www.hrsa.gov/hansensdisease/

Lupus Erythematosus
Lupus Foundation of America
https://www.lupus.org/


Marfan Syndrome
The Marfan Foundation
https://www.marfan.org/

Mastocytosis
The Mastocytosis Society, Inc.
https://www.mastocytosis.com

Melanoma
American Melanoma Foundation
https://www.melanomafoundation.org/


Neurofibromatosis
Children’s Tumor Foundation
https://www.ctf.org/

Nevi
The Nevus Network
https://www.nevusnetwork.org/

Nevus Outreach
https://www.nevus.org/


Pediculosis
National Pediculosis Association
https://www.headlice.org/

Pemphigus and Pemphigoid
International Pemphigus and Pemphigoid Foundation (IPPF)
https://www.pemphigus.org/

Porphyria
American Porphyria Foundation
https://www.porphyriafoundation.com/

Pseudoxanthoma Elasticum (PXE)
PXE International
https://www.pxe.org/

Psoriasis
National Psoriasis Foundation
https://www.psoriasis.org/


Rosacea
National Rosacea Society
https://www.rosacea.org/


Sarcoidosis
Foundation for Sarcoidosis Research
https://www.stopsarcoidosis.org/

Scabies — See Pediculosis

Scleroderma
Scleroderma Foundation
https://www.scleroderma.org

Scleroderma Research Foundation
https://www.srfcure.org/

Sjögren’s Syndrome
Sjögren’s Syndrome Foundation, Inc.
https://www.sjogrens.org/

Skin Cancer
Skin Cancer Foundation
https://www.skincancer.org/

Sturge-Weber Syndrome
The Struge-Weber Foundation
https://www.sturge-weber.org/index.php


Tuberous Sclerosis
Tuberous Sclerosis Alliance
https://www.tsalliance.org


Vascular Anomalies
Vascular Birthmarks Foundation
https://www.birthmark.org/

Vitiligo and Pigment Disorders
National Vitiligo Foundation, Inc.
https://www.mynvfi.org/

American Vitiligo Research Foundation
https://www.avrf.org/


Xeroderma Pigmentosum
Xeroderma Pigmentosum Society
https://www.xps.org/

Patient Advocacy

bottom of page