Patient Support
Disclaimer:
This section of the EADV website contains links to third-party websites. Unless otherwise stated, these links are provided as other sources of information. No endorsement by the EADV of any kind as to their content or quality is implied.
ALLERGIES, SKIN and ASTHMA
AHA (available in German, Italian and French)
Centre suisse pour l'allergie, la peau et l'asthme
BULLOUS PEMPHIGOID
Patient UK
Comprehensive health information as provided by GPs to patients during consultations
ECTODERMAL DYSPLASIA
Association Française des Dysplasies Ectodermiques (in French)
Ectodermale Dysplasie Nederland (available in Dutch, English, German and French)
Our maingoal is to connect people with Ectodermal Dysplasia. We organize once a year a conference for adults, and once a year a special playday for children with Ectodermal Dysplasia. To show these children, that they are not the only one. It gives these children confidence. We also negotiate for buying at cooling system companies, all over the world for our members.
Selbsthilfegruppe Ektodermale Dysplasie e.V. (in German)
Founded in 1998. At present our society has 176 registered members. Our main task is to provide information for people affected by ED and to physicians, to provide medical advice through our medical advisory board. We constituted a forum for exchanging information and views, we keep a comprehensive bibliography which is provided upon request. The medical advisory board includes various specialists from fields relevant to Ectodermal Dysplasia. Our annual conference is held in different locations in Germany, usually in May, to offer as many families as possible the opportunity to attend. We are member of ACHSE, EURORDIS and orphanet.
ECZEMA
National Eczema Society
The National Eczema Society offers support, information and advice for people with eczema and their carers. It is UK based and cannot send hard copies of its information overseas, but arrange of information can be downloaded from its website.
GORLINS SYNDROME
Gorlin Syndrome Group
The Gorlin Syndrome Group is organised by patients affected by Gorlin Syndrome (Nevoid Basal Cell Carcinoma Syndrome or Basal Cell Nevus Syndrome) and their families, with support from a medical advisory board.
HERPES
International Herpes Alliance
The International Herpes Alliance (IHA) is a global association of patient support organizations and health professionals concerned about genital herpes. The organization's website provides information about regional support groups, educational material, issues and events of interest to those with genital herpes. All information has been developed using a patient-centred approach.
Herpes Viruses Association
The Herpes Viruses Association is the UK patient support group, created by and for patients -and endorsed by doctors including members of the British Association for Sexual Health and HIV. The website includes friendly "frequently asked questions"; and a "patient information leaflet" that can be printed off the publication page. A helpline service is available on weekdays. Members receive leaflets and journals and clinics and surgeries can order the comprehensive 'Herpes simplex -the Guide' for distribution to patients. Short answers to questions are answered by email.
HYPERHIDROSIS
HYPOMELANOSIS of ITO
ICHTHYOSIS
Ichthyosis Support Group
The Ichthyosis Support Group (ISG) was formed in 1997 by a group of individuals affected by ichthyosis to create a network of parents, sufferers and medics.
INCONTINENTIA PIGMENTI
Incontinentia Pigmenti International Foundation
The Incontinentia Pigmenti International Foundation, Inc. (IPIF), is a voluntary non-profit organization founded in 1995. It is guided by a Scientific Advisory Council whose members are acknowledged experts in their fields related to IP. IPIF consists of patients, physicians, educators, parents, relatives, and volunteers who are striving to take a leadership role in supporting research, education, and funding with an ultimate aim to ameliorate the burdens of IP. IPIF is a source of reliable information and support for patients and families both in the United States and worldwide.
LICHEN SCLEROSUS
National Lichen Slerosus Support Group
NLSSG offers support and information to women, men and the parents of children who are diagnosed with lichen sclerosus. It aims to relieve the sense of isolation that many patients feel. Support is by the website, email, letter and telephone on a one to one basis.
LUPUS
Lupus UK
Lupus UK is the national registered charity supporting people with systemic lupus and discoid lupus and assisting those reaching diagnosis. We presently have some 6,000 members, and 30 Regional Groups who arrange medical talks, publish local newsletters, set up social occasions and organise fundraising events. Lupus UK also provides an informative national magazine with lupus articles, letters, reports and photographs.
PORPHYRIA
European Porphyria Initiative / European Porphyria Network
The European porphyria initiative website contains up to date and consensus agreed information on all the porphyrias. Patients are able to download specific information in their own language.
PSORIASIS
World Psoriasis Day: 29th October 2009
Association Pour la Lutte Contre le Psoriasis (in French)
Deutscher Psoriasis Bund e.V. (in German)
The German Psoriasis Association was established in 1973. Today we have more than 7.000 members. In 35 regional groups, teams of volunteers organize meetings and lectures and help you with your personal problems. Additional we have more than hundred contact persons all over Germany, who are willing to let you take part of their experiences. Our office is the central advice and direction facility where you can get information as well as the phone numbers of our regional groups and contact persons in your area.
Acció Psoriasi (in Spanish)
Created in 1993, 1.500 members. Acció Psoriasi is a non-profit association made up of psoriatic patients, relatives and health professionals. Our main goal is providing information and attention to improve the quality of life on psoriatic patients.
SPVG (Schweizerische Psoriasis und Vitiligo Gesellschaft) (available in German and French)
PSORIATIC ARTHRITIS
PAPAA (A principal source of information on psoriasis and psoriatic arthritis)
PAPAA is independently funded and aims to be a definitive source of information and educational material for people with psoriasis and psoriatic arthritis in the UK. To be a support to both patients and professionals by providing material that can be trusted (evidence based), which has been approved and contains no bias or agendas. We will be looking to provide positive advice that enables people to be involved as they move through their healthcare journey in an informed way, which is appropriate for their needs and any changing circumstances.
SCLERODERMA
Federation of European Scleroderma Associations (FESCA)
FESCA acts at a pan-European level to promote and achieve its objectives in alignment with the aims of the national groups it represents. As an umbrella group, FESCA supports its member organizations, while the support of individual sufferers of scleroderma remains the sole remit of national organizations.
Irish Raynaud's & Scleroderma Society
The Irish Raynaud's & Scleroderma Society is a patient support group providing information and help to people with these conditions. The society publishes a Newsletter twice yearly and runs an annual conference in the spring.
SKIN CANCER
Euromelanoma Day: 11th May 2009 (available in English, Dutch and French)
TUBEROUS SCLEROSIS
Tuberous Sclerosis Association
Established for over 30 years, The Tuberous Sclerosis Association's aim is to promote awareness, research and the best management of Tuberous Sclerosis Complex, and support all affected individuals and families. The TSA employs 4 part time TSC advisers who are able to offer support.
VITILIGO
The Vitiligo Society
The Vitiligo Society is a registered charity. It is the only organisation which offers support and understanding to people with vitiligo and their families in the UK and the Republic of Ireland.
VULVAL PAIN
Vulval Pain Society
The Vulval Pain Society (VPS) is a confidential service for women who suffer from vulval pain due to vestibulodynia and vulvodynia. It runs 3-4 workshops a year which provide a safe, informal environment for women and their partners to learn more about their condition and to receive support.
XERODERMA PIGMENTOSUM
Xeroderma Pigmentosum Support Group