Self-help groups
Patients with skin disease, especially those with a chronic condition, often find it helpful to meet and speak with others with the same problem. Patient help groups (known as patient advocate groups in the USA) fulfil a particular need by helping the patient to come to terms with his or her disease, by informing the patient through meetings and publications of advances in treatments and benefits that may be available to them, and by providing support through difficult times. Several of them are also actively engaged in fundraising to support research and are involved in advancing their cause, and that of dermatology generally, in the local and national media. The addresses of some of the patient help groups, and of other organizations that are of service to those with skin problems, are given here. In the UK, details of support groups can be obtained through the Skin Care Campaign (details below); in the USA, through the Coalition of Skin Diseases, 4301 Connecticut Avenue, NW, Suite 404, Washington, DC 20008-2369 (http://www.coalitionofskindiseases.org/).
Web: www.ectodermaldysplasia.org
National Foundation for Ectodermal Dysplasias
Web: www.nfed.org
Web: www.eczema.org
National Eczema Association for Science and Education
Ehlers–Danlos National Foundation
1760 Old Meadow Road, Suite 500
Web: www.ednf.org
Dystrophic Epidermolysis Bullosa Research Association
Web: www.debra.org.uk
Web: www.debra.org
Congenital Melanocytic Naevus Support Group
Web: www.caringmattersnow.co.uk
600 SE Delaware Avenue, Suite 200
Web: www.nevus.org
Web: www.pemphigus.org.uk
International Pemphigus and Pemphigoid Foundation
Web: www.pemphigus.org
Pseudoxanthoma Elasticum (PXE) Support Group
Web: www.pxe.org.uk
Washington, DC 20008-2369, USA
Web: www.pxe.org
Web: www.psoriasis-association.org.uk
Psoriasis and Psoriatic Arthritis Alliance
Web: www.papaa.org
Web: www.psoriasis.org
Raynaud’s and Scleroderma Association Trust
Web: www.raynauds.org.uk
Web: www.scleroderma.org
Web: www.macmillan.org.uk/Home.aspx
Skin Cancer Information Network MARC’S LINE (Melanoma and Related Cancers of the Skin)
Web: www.wessexcancer.org
Basal Cell Carcinoma Nevus Syndrome/Gorlin Syndrome
Web: www.bccns.org
Tuberous Sclerosis Association
Web: www.tuberous-sclerosis.org
Web: www.tsalliance.org
Web: www.vitiligosociety.org.uk
Vitiligo Support International, Inc.
Web: www.vulvalpainsociety.org/
National Vulvodynia Association
Silver Spring, MD 20914-4491, USA
Web: www.nva.org
Xeroderma Pigmentosum Support Group
Web: http://joomla.xpsupportgroup.org.uk/
Web: www.xps.org