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
AcneAcneNet is the first section of DermInfoNet, sponsored by the
AlbinismNOAH (National Organization for Albinism and Hypopigmentation) 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 areataNational Alopecia Areata Foundation
AmyloidThe Amyloid Treatment and Research Program from Boston University School of Medicine includes information for patients and doctors.
Ataxia telangiectasiaAtaxia-Telangiectasia Children's Project
Behçet diseaseThe American Behçet's Disease Association
BirthmarksVascular Birthmarks Foundation
Congenital moles (nevi or nevus)Nevus Network
Dermatitis herpetiformisGluten Intolerance Group
Ectodermal dysplasiasNational Foundation for Ectodermal Dysplasias
EczemaNational Eczema Association
Ehlers-Danlos syndromeEhlers-Danlos National Foundation
Epidermolysis bullosaDystrophic Epidermolysis Bullosa Research Association of America
HerpesNovartis 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
Hereditary hemorrhagic telangiectasia (Osler-Weber-Rendu Syndrome)
HyperhidrosisThis site is an Italian doctor's summary of hyperhidrosis, complete with conventional and nonconventional treatment.
Ichthyosis and related disordersFoundation for Ichthyosis & Related Skin Types
Incontinentia pigmentiNational Incontinentia Pigmenti Foundation
LeprosyWorld Health Organization's site about leprosy
ItchInternational Forum for the Study of Itch is an international forum for the study of and living with itch.
LupusLupus 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. 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
Mycosis fungoides (cutaneous T-cell lymphoma)Mycosis Fungoides Foundation
NeurofibromatosisThe (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
Pemphigus and pemphigoidInternational Pemphigus Foundation
Pityriasis rubra pilarisPRP Support Group
Pseudoxanthoma elasticumNational Association for Pseudoxanthoma Elasticum
PorphyriaAmerican Porphyria Foundation offers dietary guidelines, pictures, and FAQs (frequently asked questions) for a donation.
PsoriasisNational 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 diseasesNational Organization for Rare Disorders
RosaceaNational Rosacea Society
SarcoidosisSarcoidosis Online Sites includes a patient newsletter and links to more relevant sarcoidosis Internet sites.
SclerodermaScleroderma 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 syndromeSjögren's Syndrome Foundation
Skin cancerThe Skin Cancer Foundation
Sturge-Weber syndromeThe Sturge-Weber Foundation
Tuberous sclerosisTuberous Sclerosis Alliance
VitiligoNational Vitiligo Foundation
Xeroderma pigmentosaXeroderma Pigmentosa Society
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