Patient Support Groups

The following is an alphabetical list of national, regional and local patient support groups for people with skin diseases. They are often run by volunteers who have the disease themselves, and many people find it enormously valuable to have such contact with others both for support and for practical help. These charities may also provide information about research studies, fundraising events and more.

Basal cell carcinoma

Behcet's Syndrome

Birt-Hogg-Dubé (BHD) Syndrome


  • Birthmark Support Group |

Bowen's disease

Darier's disease

  • Darier's Disease Support Group Mrs J Davies 29 St Annes Road Hakin Milford Haven Pembrokeshire SA73 3LQ Tel: (01646) 695055

Dermatitis herpetiformis


Dermatofibrosarcoma protuberans

Discoid lupus erythematosus

Dissecting cellulitis of the scalp

Disseminated superficial actinic porokeratosis

Dystrophic epidermolysis bullosa

Ectodermal Dysplasia

Epidermolysis bullosa simplex

Gorlin Syndrome

Granuloma annulare

Hailey-Hailey disease

Hereditary leiomyomatosis and renal cell cancer (HLRCC)

Hidradenitis suppurativa

Junctional epidermolysis bullosa

Juvenile xanthogranuloma

Lentigo maligna and melanoma in situ

Lichen planus

Lichen sclerosus


Male genital lichen sclerosus

Marfan Syndrome

  • Marfan Association UK


Necrobiosis lipoidica


Other national support groups


Pseudoxanthoma Elasticum (PXE)

Squamous cell carcinoma

Sturge Weber syndrome

Subacute lupus erythematosus (SCLE)

Telogen effluvium

Tuberous Sclerosis Complex (TSC)

Xeroderma Pigmentosum