Patient Support Groups

The University of Iowa web site lists many dermatologic support groups. This is a good site for patients with rare conditions who wish to find others with the same disease.

The American Academy of Dermatology has an extensive list of foundations, institutes, and support groups.

Genetic Alliance

The National Institutes of Health Office of Rare Diseases has information on more than 6000 rare diseases.

National Organization for Rare Disorders web page includes a searchable database of more than 900 diseases.

DISEASE-SPECIFIC SITES

Email discussion lists for vitiligo, mastocytosis, melanoma, pseudoxanthoma elasticum, cutaneous T-cell lymphoma, pemphigus, lupus erythematosus, and others are listed on the University of Iowa's web pages.

DermNet (New Zealand Dermatological Society) has information on a large number of skin conditions, written primarily for patients.

The Mayo Clinic provides medical information.

Acne

AcneNet is the first section of DermInfoNet, sponsored by the American Academy of Dermatology (ADD).

Virtual Lecture Hall's course about acne

Albinism

NOAH (National Organization for Albinism and Hypopigmentation)

Allergy

Allergy, Asthma & Immunology Online (ACAAI) is an information and news service.

American Academy of Allergy, Asthma, & Immunology (AAAAI) Online has information both for physicians (upcoming meetings, continuing medical education [CME], available audiotapes) and for patients (asthma, sinusitis, and common allergies).

The National Institute of Allergy & Infectious Diseases has information about clinical trials and some patient information.

The Food Allergy & Anaphylaxis Network goals are to increase public awareness of food allergies and anaphylaxis, to provide education, and to advance research on behalf of those affected by food allergies.

National Jewish Medical and Research Center web site has a useful MedFacts section with information on allergic and immunologic diseases.

National Institute for Occupational Safety & Health (NIOSH) Alert, "Preventing allergic reactions to natural rubber latex in the workplace."

Alopecia areata

National Alopecia Areata Foundation

Amyloid

The Amyloid Treatment and Research Program from Boston University School of Medicine includes information for patients and doctors.

Ataxia telangiectasia

Ataxia-Telangiectasia Children's Project

Behçet disease

The American Behçet's Disease Association

Birthmarks

Vascular Birthmarks Foundation

Congenital moles (nevi or nevus)

Nevus Network

Dermatitis herpetiformis

Gluten Intolerance Group

Ectodermal dysplasias

National Foundation for Ectodermal Dysplasias

Eczema

National Eczema Association

Ehlers-Danlos syndrome

Ehlers-Danlos National Foundation

Epidermolysis bullosa

Dystrophic Epidermolysis Bullosa Research Association of America

Herpes

Novartis has a pharmaceutically sponsored web site for physicians and their patients with genital herpes.

Glaxo has sponsored HerpesWeb, an informative site for patients and physicians, on its herpes web site.

The International Herpes Alliance web site in Europe has excellent information regarding herpes, including advice on how to tell someone you care about that you have herpes.

The International Herpes Management Forum has treatment guidelines for physicians including herpes in pregnancy and herpes in HIV infection.

Hereditary hemorrhagic telangiectasia (Osler-Weber-Rendu Syndrome)

Hyperhidrosis

This site is an Italian doctor's summary of hyperhidrosis, complete with conventional and nonconventional treatment.

Ichthyosis and related disorders

Foundation for Ichthyosis & Related Skin Types

Incontinentia pigmenti

National Incontinentia Pigmenti Foundation

Leprosy

World Health Organization's site about leprosy

Itch

International Forum for the Study of Itch is an international forum for the study of and living with itch.

Lupus

Lupus Foundation of America web page includes discussion groups, tests, and treatment options.

Hamline University Lupus Organization includes archives of two lupus mailing lists (for patients). It also has an ask-the-expert area for dermatologists and patients.

Melanoma

A melanoma instruction course from the Virtual Lecture Hall offers continuing medical education (CME) credit for primary care physicians.

OncoLink's pages about melanoma include an atlas, many articles, and links about melanoma for patients and health professionals.

Melanoma Research Project is an informative site based in Germany.

Melanoma Patients' Information Page contains lots of helpful information including a prognostic calculator.

University of Pittsburgh Cancer Institute lists its clinical trials for melanoma.

The Yale Cancer Center also lists clinical trials for melanoma.

The Cancer Control Journal has an informative issue on melanoma (Moffitt Cancer Center and Research Institute).

Sydney Melanoma Unit, Melanoma Foundation & MASCRI (Melanoma Skin Cancer Research Institute)

Dr. Huntley's melanoma course for medical students at the University of California at Davis includes many high-quality images. The linked site You Can Be An Expert At Diagnosing Melanoma presents the important features to allow anyone to learn when to suspect a melanoma.

National Cancer Institute's CancerNet Physician Data Query (PDQ) melanoma information service

The Melanoma Research Foundation is a nonprofit organization dedicated to finding a cure for melanoma.

Canadian Melanoma Foundation

The Johns Hopkins Oncology Center Melanoma & Cutaneous Oncology Clinic

Clinical Breakthroughs in Melanoma is a paper presented to the Society of Surgical Oncology in 1996.

The M.D. Anderson OncoLog (University of Texas) site includes a description of sentinel lymph node mapping.

Melanoma in pregnancy, a case report and debate of treatment published in the British Medical Journal

Mycosis fungoides (cutaneous T-cell lymphoma)

Mycosis Fungoides Foundation

Neurofibromatosis

The (US) National Neurofibromatosis Foundation Inc. includes links to international organizations.

Headlice.org is the web site for the National Pediculosis Association.

Headlice information from the Laboratory of Public Health Entomology at Harvard

Parasites and parasitologic resources from Ohio State University

The Cutaneous Parasite Home Page

Veterinary Parasitology from Oklahoma State University

Pemphigus and pemphigoid

International Pemphigus Foundation

Pityriasis rubra pilaris

PRP Support Group

Pseudoxanthoma elasticum

National Association for Pseudoxanthoma Elasticum

Porphyria

American Porphyria Foundation offers dietary guidelines, pictures, and FAQs (frequently asked questions) for a donation.

Psoriasis

National Psoriasis Foundation has comprehensive information about psoriasis for physicians and patients.

The Skin Page provides searches within newsgroups and other databases, with a focus on psoriasis support and self-help.

Rare diseases

National Organization for Rare Disorders

Rosacea

National Rosacea Society

Sarcoidosis

Sarcoidosis Online Sites includes a patient newsletter and links to more relevant sarcoidosis Internet sites.

Scleroderma

Scleroderma Foundation provides FAQs and support group information.

Surviving Scleroderma web site provides information and support.

The Scleroderma Center at Boston University School of Medicine describes some of their research.

Sjögren syndrome

Sjögren's Syndrome Foundation

Skin cancer

The Skin Cancer Foundation

Sturge-Weber syndrome

The Sturge-Weber Foundation

Tuberous sclerosis

Tuberous Sclerosis Alliance

Vitiligo

National Vitiligo Foundation

Xeroderma pigmentosa

Xeroderma Pigmentosa Society

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