Alopecia Areata National Alopecia Areata Foundation
Ataxia-Telangiectasia National Ataxia Foundation
Ataxia-Telangiectasia A-T Children's Project
Behcet's Syndrome American Behcet's Disease Association
Bloom's Syndrome Bloom's Syndrome Registry
c/o Laboratory of Human Genetics
Contact: James L. German, III, MD
Tel: 212-570-3075
Cancer American Cancer Society
Chicken Pox / Shingles (Varicella - zoster) VZV Research Foundation
Tel: 212-472-3181
Contact Dermatitis American Contact Dermatitis Society
Cutaneous T-Cell Lymphoma - Mycosis Fungoides CTCL-MF E-Mail Support List
To Subscribe, send email to:
In Body of Email write:  Subscribe CTCL-MF
Owned/founded by:  Judy Jones
Cutaneous T-Cell Lymphoma - Mycosis Fungoides Mycosis Fungoides Foundation
Dermatitis Herpetiformis American Celiac Society
Tel: 201-325-8837
Dermatitis Herpetiformis Celiac Disease Foundation
Tel: 402-558-0600
Dermatitis Herpetiformis Celiac Sprue Association/USA
Contact person: Leon H. Rothmann
Tel: 402-558-0600
Dermatitis Herpetiformis Gluten Intolerance Group
Contact: Cynthia Kupper, CRD
Tel: 206-246-6652
Dermatomyositis The Myositis Association of America
Dermatomyositis Muscular Dystrophy Association
Tel: 602-529-2000
Ectodermal Dysplasia National Foundation of Ectodermal Dysplasia
Eczema The National Eczema Society
Eczema National Eczema Association
Ehlers-Danlos Syndrome Ehlers-Danlos National Foundation
Epidermolysis Bullosa Dystrophic Epidermolysis Bullosa Research Association of America (D.E.B.R.A. of America, Inc.)
Contact: Miriam Feder
Tel: 212-995-2220
Epidermolysis Bullosa National Epidermolysis Bullosa Registry
Clinical Coordinating Center
University of North Carolina - Chapel Hill
Tel: 919-966-3321
Tel: 919-966-6383
Epidermolysis Bullosa National Epidermolysis Bullosa Registry (NEBR)
Southwest Clinical Site
Stanford University School of Medicine
Genetic Disease Genetic Alliance – Advocacy, Education & Empowerment
Hansen's Disease See Leprosy
Hemangiomas See Klippel-Trenaunay Syndrome
Hemochromatosis Hemochromatosis Research Foundation
Contact: Margit Krikker, MD
Tel: 518-489-0972
Herpes Herpes Resource Center
Herpes Resource Center American Social Health Association
Hidradenitis Suppurativa Hidradenitis Suppurativa Foundation, Inc. (HSF)
Histiocytosis Histiocytosis Association of America
Human Papillomavirus HPV Support Program
American Social Health Association
Tel: 800-227-8922
Ichthyosis Foundation for Ichthyosis and Related Skin Types
Ichthyosis National Registry for Ichthyosis and Related Disorders
Incontinentia Pigmenti National Inconitentia Pigmenti Foundation
Contact: Susanne B. Emmerich
Tel: 212-207-4636
Klippel-Trenaunay Klippel-Trenaunay Support Group
Leprosy (Hansen's Disease) WHO | Leprosy Today
Leprosy (Hansen's Disease) Damien Dutton Society for Leprosy Aid
Contact: Howard Crouch
Tel: 516-221-5929
Lice See Pediculosis
Lupus Erythematosus American Lupus Society
Tel: 800-331-1802 (Info Line); 805-339-0443
Lupus Erythematosus Lupus Foundation of America, Inc.
Lupus Erythematosus Massachusetts Chapter
Contact: Mimi LaCamera
Tel: 617-332-9014
Lupus Erythematosus Bay Area Lupus Foundation
Contact: Jo Dewhirst
Tel: 408-954-8600 (Calif: 800-523-3363)
Lymphomatoid Papulosis
(and Ki-1 positive cutaneous lymphomas)
Lymphomatoid Papulosis Central Registry
Department of Pathology Beth Israel Hospital
Tel: 627-735-5886
Marfan's Syndrome National Marfan Foundation
Tel: 516-883-8712
Mastocytosis The Mastocytosis Society
Melanoma American Melanoma Foundation
USC/Norris Cancer Center
Tel: 213-226-6352
Melanoma Sloan-Kettering - Memorial Sloan-Kettering Cancer Ctr
Melanoma Melanoma Foundation
750 Menlo Ave Suite 250
Menlo Park, CA   94025
Contact:  Marsden S. Bloise, MD
Muscular Dystrophy Muscular Dystrophy Association
Tel: 602-529-2000
Tel: 212-557-8450
Mycosis Fungoides See Cutaneous T-Cell Lymphoma
Myositis The Myositis Association of America
Neurofibromatosis The Children's Tumor Foundation
Nevi Nevus Network
Congenital Nevus Support Group
Tel: (703) 492-0253
Nevi Nevus Outreach, Inc
Ostomy United Ostomy Association
Contact: Darlene A. Smith, Director
Tel: 714-660-8624 or 800-826-0826
Pediculosis National Pediculosis Association
Contact: Deborah Altschuler, Director
Tel: 617-449-6487
Pemphigus and Pemphigoid International Pemphigus & Pemphigoid Foundation
Port Wine Stain National Congenital Port Wine Stain Foundation
Tel: 516-867-5137
Pseudofolliculitis Barbae PFB Project (Pseudofolliculitis Barbae)
Contact: Melvin A. Alexander
Tel: 202-588-5300
Pseudoxanthoma Elasticum (PXE) National Association for Pseudoxanthoma Elasticum, Inc. (NAPE)
Tel: 303 832-5055
Pseudoxanthoma Elasticum (PXE) PXE International
Psoriasis Canadian Psoriasis Foundation
Tel: 613-728-4000
In Canada: 800-265-0926
Psoriasis Psoriasis Foundation
Psoriasis Psoriasis Research Association
Contact: Diane Bradley Mullins, Director
Tel 415-593-1392
Psoriasis Psoriasis Society of Canada National Office
Tel: 902-443-8680
Rare Disorders Office of Rare Diseases
Rare Disorders NORD - National Organization for Rare Disorders, Inc.
Rosacea National Rosacea Society
Sarcoidosis Sarcoidosis Family Aid & Medical Research Foundation
Contact: Geneva Ausley, President & Founder
Tel: 201-399-3644 or 800-203-6429
Scabies See Pediculosis
Scleroderma Association des Sclerodermiques de France
Tel : (33)
Scleroderma Scleroderma Foundation
Scleroderma Scleroderma Federation of the Tri State Area (NY, NJ, CT)
Tel: 201-837-9826
Scleroderma Scleroderma Foundation of Greater Chicago
Contact: Pat Straessle, Patient Services
Tel: 312-922-3532
Scleroderma Scleroderma Info Exchange, Inc.
Contact: Nancy D. Hersy, Director
Tel: 401-943-3909
Scleroderma Scleroderma Research Foundation
Tel: 805-563-9133
Scleroderma Scleroderma Society
Contact: Mark Flagan, PhD., President
Tel: 212-427-7040
Scleroderma Scleroderma Research Foundation
Shingles See Chicken Pox, Varacella
Sjogren's Syndrome National Sjögren Syndrome Association
Tel: 602-516-0787
Toll-free number: 1-800-395-6772
1-800-395-NSSA - M-F, 9-4
Sjogren's Syndrome Sjögren's Syndrome Foundation
Skin Cancer Also see Melanoma
Skin Cancer Skin Cancer Foundation
Contact: Mitzi Moulds
Tel: 212-725-5176
Skin Cancer Nevoid Basal Cell Carcinoma Syndrome Support Network 162 Contact: Susan A. Charron
Tel: 508-485-4873
Tel: 800-815-4447
Sturge-Weber Syndrome Sturge-Weber Foundation
Tel: 303-360-7290
Tel: 800-627-5482
Sturge-Weber Syndrome Sturge-Weber Foundation (SWF)
Tel: 201-895-4445
Tel: 800-627-5482
Tuberous Sclerosis National Tuberous Sclerosis Assocation
Tuberous Sclerosis Tuberous Sclerosis International - TSI
Tel/Fax: +31 30 2281821
Addresses for TSI representatives in 26 countries world-wide.
Vitiligo National Vitiligo Foundation, INC.
Vitiligo Frontier's International Vitiligo Foundation
4 Rozina Ct.
Owings Mills, MD 21117
Vitiligo National Foundation for Vitiligo & Pigment Disorders
Tel: 513-885-5739
Vitiligo National Organization for Albinism and Hypopigmentation
Tel: 800-473-2310
Xeroderma Pigmentosum Xeroderma Pigmentosum Society
Xeroderma Pigmentosum Xeroderma Pigmentosum Registry
Contact: W. Clark Lambert, MD
Tel: 201-982-4405