Organizations
Alopecia Areata
Ataxia-Telangiectasia
Ataxia-Telangiectasia
Behcet's Syndrome
Bloom's Syndrome Registry
c/o Laboratory of Human Genetics
Contact: James L. German, III, MD
Tel: 212-570-3075
Cancer
Chicken Pox / Shingles (Varicella - zoster)
VZV Research Foundation
Tel: 212-472-3181
Contact Dermatitis
Cutaneous T-Cell Lymphoma - Mycosis Fungoides
CTCL-MF E-Mail Support List
To Subscribe, send email to: listserv@acor.org
In Body of Email write: Subscribe CTCL-MF
Owned/founded by: Judy Jones judy@mffoundation.org
Cutaneous T-Cell Lymphoma - Mycosis Fungoides
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
Dermatomyositis
Muscular Dystrophy Association
Tel: 602-529-2000
Ectodermal Dysplasia
Eczema
Eczema
Ehlers-Danlos Syndrome
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
Genetic Disease
Hansen's Disease
See Leprosy
Hemangiomas
See Klippel-Trenaunay Syndrome
Hemochromatosis
Hemochromatosis Research Foundation
Contact: Margit Krikker, MD
Tel: 518-489-0972
Herpes
Hidradenitis Suppurativa
Histiocytosis
Human Papillomavirus
HPV Support Program
American Social Health Association
Tel: 800-227-8922
Incontinentia Pigmenti
Incontinentia Pigmenti International Foundation
Contact: Susanne B. Emmerich
Tel: 212-207-4636
Klippel-Trenaunay
Leprosy (Hansen's Disease)
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 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
800-8-MARFAN
Mastocytosis
Melanoma
American Melanoma Foundation
USC/Norris Cancer Center
Tel: 213-226-6352
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
Neurofibromatosis
Nevi
Nevus Network
Congenital Nevus Support Group
Tel: (703) 492-0253
Nevi
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
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
E-Mail: derkhn@ttuhsc.edu
Pseudoxanthoma Elasticum (PXE)
Psoriasis
Canadian Psoriasis Foundation
Tel: 613-728-4000
In Canada: 800-265-0926
Psoriasis
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
Rare Disorders
Rosacea
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) 21.24.18.72
Scleroderma
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
Scleroderma Society
Contact: Mark Flagan, PhD., President
Tel: 212-427-7040
Shingles
See Chicken Pox, Varacella
Sjogren's Syndrome
National Sjögren Syndrome Association
Tel: 602-516-0787
Toll-free number: 1-800-395-6772
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
E-mail: Souldansur@aol.com
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
Tuberous Sclerosis
Tuberous Sclerosis International - TSI
Tel/Fax: +31 30 2281821
e-mail: jdenhollander@crystal.feo.hvu.nl
Addresses for TSI representatives in 26 countries world-wide.
Vitiligo
Vitiligo
Frontier's International Vitiligo Foundation
4 Rozina Ct.
Owings Mills, MD 21117
Vitiligo
National Organization for Albinism and Hypopigmentation
Tel: 800-473-2310
Xeroderma Pigmentosum
Xeroderma Pigmentosum
Xeroderma Pigmentosum Registry
Contact: W. Clark Lambert, MD
Tel: 201-982-4405