| 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: 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 | 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 800-8-MARFAN |
| 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 E-Mail: derkhn@ttuhsc.edu |
| 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) 21.24.18.72 |
| 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 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 | National Tuberous Sclerosis Assocation |
| 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 | 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 |