Patient Support Groups
The ILDS has researched various English language patient support groups and websites and has compiled a list of the best sites available for patients to learn more of their conditions and to interact with other patients.
These sites are not sites created by the ILDS, and the ILDS does not endorse any view expressed.
Click the following links to jump to patient support groups specific to these common skin diseases, or scroll down to see the entire list.
Alopecia | Acne | Birthmarks | Congenital Nevi
Connective Tissue | Eczema | HIV | Leprosy | Nail Disorders | Psoriasis | Rosacea | STD | Skin Cancer | Vitiligo | Various
- Caring Matters Now (CMN) - The Congenital Melanocytic Naevus Support Group
- Changing Faces
- Nevus Network
- Nevus Outreach - The Assocation for Large Nevi & Related Disorders
- Ehlers-Danlos National Foundation (EDNF)
- Ehlers-Danlos Support Group
- Marfan Association UK
- National Marfan Foundation
- National Association for Pseudoxanthoma Elasticum
- Pseudoxanthoma Elasticum International (PXE)
- Pseudoxanthoma Elasticum (PXE) Support Group UK
- Scleroderma Foundation
- Scleroderma Research Foundation
- Scleroderma Society
- Eczema/Excema/Dermatitis Forum
- National Eczema Association for Science and Education (NEASE)
- National Eczema Society
- African HIV Policy Network - Empowering African Communities affected by HIV
- Aidsmap - Information on HIV & AIDS
- AIDS Alternatives Support Fourm
- AIDS Health Project Support Groups
- Health Information for Women with HIV & AIDS from The Well Project
- HIV-AIDS Carers & Family Service Provider Scotland
- HIV Stops With Me
- HIV Support Groups US
- Naz Project London - Sexual Health & HIV Services for Black and Minority Ethnic Communities
- Positively Women - Living with HIV, Changing Lives
- National Psoriasis Foundation (NPF)
- My Skin's On Fire
- Psoriasis Alternatives Support Forum
- Psoriasis Association UK
- Psoriasis and Psoriatic Arthritis Alliance
- Psoriasis and Skin Diseases Self Help
- Psoriasis Help Organisation
- International Federation of Psoriasis Associations (IFPA)
- World Psoriasis Day - October 29th 2008
SKIN CANCER
(Basal cell, lymphoma, squamous cell, melanoma)
- American Cancer Society
- American Melanoma Foundation
- Basal Cell Carcinoma Nevus Syndrome/Gorlin Syndrome (BCCNS Life Support Network)
- Cancer Backup
- Cutaneous Lymphoma Foundation
- Gorlin Syndrome Group
- James A. Schlipmann Melanoma Cancer Foundation
- Lymphoma Research Foundation
- Melanoma Center
- Melanoma Education Foundation
- Melanoma International Foundation
- Melanoma Patients' Information Page
- Melanoma Research, Inc. (The Billy Foundation)
- Melanoma Research Foundation
- National Council on Skin Cancer Prevention
- SHADE Foundation - The Curt and Schonda Schilling Melanoma Foundation
- Skin Cancer Foundation
VARIOUS
- including Dermatomyostitis, Genetic Disease (Icthyosis, Epidermolysis bullosa), Kaposi's Sarcoma, Leishmaniasis, Lupus erythematosis, Pemphigus Pemphigoid, Photosensitivity, Stasis Ulcers, Vasculitis, Xerosis
- Allergy UK
- American Head Lice Information Center
- American Hemochromatosis Society, Inc.
- American Porphyria Foundation
- American Skin Association
- American Behcet's Disease Association
- American Porphyria Foundation
- Ataxia-Telangiectasia Children's Project
- Behcet's Syndrome Society
- British Association of Skin Camouflage
- Canadian Skin Patient Alliance
- Dariers Disease Resource Site
- Degos Disease
- Dermatitis Herpetiformis (Gluten Intolerance Group)
- Dystrophic Epidermolysis Bullosa Research (DebRA of America, Inc.)
- Dystropic Epidermolysis International - DebRA International
- Dystropic Epidermolysis UK - DebRA UK
- Ectodermal Dysplasia Society
- Epidermolysis Bullosa Medical Research Foundation
- Foundation for Ichthyosis and Related Skin Types (F.I.R.S.T.)
- Hidradenitis Suppurativa Foundation
- Hyperhidrosis Support Group
- Ichthyosis Support Group
- Inflammatory Skin Disease Institute (ISDI)
- Inconitentia Pigmenti International Foundation
- International Pemphigus & Pemphigoid Foundation (IPPF)
- Klippel-Trenaunay Syndrome Support Group
- Latex Allergy Support Group
- Let's Face It - International Support Network for People with Facial Disfigurement
- Lupus UK
- Lupus Foundation of America, Inc.
- Lymphoedema Support Network
- Myositis Assocation (Dermatomyositis)
- Myositis Support Group
- National Foundation for Ectodermal Dysplasias (NFED)
- National Lichen Sclerosus Support Group
- National Neurofibromatosis Foundation
- National Organization for Albinism and Hypopigmentation (NOAH)
- National Organization of Vascular Anomalies (NOVA) - Hemangioma & Vascular Malformation Advocacy and Support
- National Pediculosis Association - Headlice.org
- National Registry for Icthyosis and Related Disorders
- Neurofibromatosis Association
- Pachyonychia Congenita Project (Palmoplantar Keratoderma)
- Pemphigus Vulgaris Network
- Raynaud's & Scleroderma Association Trust
- Shingles Support Society
- Sjögren's Syndrome Foundation (Autoimmune Disorder)
- Skin Camouflage Association
- SkinCell International Forum for Skin Disorders
- Telangiectasia Self Help Group
- Xeroderma Pigmentosum Society
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