Patient Support Groups
The following is a list of patient support groups for those suffering from all types of skin disease. Most often, they are run by volunteers who suffer from the same disease and can therefore use their personal experience to give advice to others. Many of our patients find this very valuable to have such contact with others for support and help, both physically and emotionally.
Allergy UK is a national medical charity established in 1991 to increase understanding and awareness of allergy, to help people manage their allergies, to raise funds for allergy research and to provide training in allergy for healthcare professionals.
Alopecia UK aims to provide information, support and advice for people with experience of alopecia areata, alopecia totalis and alopecia universalis and to also raise public awareness and understanding of alopecia throughout the UK whilst supporting and funding research into alopecia.
The society, a registered Charity run by unpaid volunteers, exists to provide contact and support to sufferers from Behcet’s Syndrome. Through its help lines, leaflets and newsletters it provides information and counseling to over 1350 members. Charitable Aid and Research Grants are made from time to time.
The British Association of Skin Camouflage is a non-profit making organisation formed to promote the awareness of remedial skin camouflage, and through our members offer this valuable service to as many patients as possible nationwide.
Very often patients are referred to camouflage practitioners as a last resort, but the impact that can be made on someone’s life through this simple and cost-effective treatment can be a tremendous step in restoring confidence and self-esteem.
The British Porphyria Association (BPA) was established in 1999 by a group of patients and relatives who had experienced isolation and difficulties due to their diagnosis, and had found there to be a general lack of understanding and assistance available. The BPA became a registered charity in 2001 and is run by a committee of volunteers.
Darier’s Disease Support Group – 01646 695055
The Darier’s Disease Support Group aims to inform, encourage and assist those with Darier’s Disease and their family members. A Newsletter is distributed annually. Members can communicate with each other for mutual support and the exchange of ideas.
DEBRA (Epidermolysis Bullosa) – www.debra.org.uk – 01344 771961 – email@example.comBRA (Epidermolysis Bullosa)
DEBRA is the national charity that supports individuals and families affected by Epidermolysis Bullosa (EB) – a painful genetic skin blistering condition.
DEBRA provides an enhanced EB Healthcare Service, in partnership with the NHS, to deliver optimal healthcare to children and adults living with EB and community support staff to work directly with individuals and families. DEBRA also provides information and help to anybody living or working with EB, including carers and healthcare professionals, and funds pioneering research to find effective treatments and, ultimately, a cure for EB.
We aim to obtain answers from medical professionals to members’ specific questions, support families when they approach organisations by putting together a personal report explaining very simply how ED affects them, liaise with headteachers, Health Authorities and medical professionals, help families get the right care for their child in schools, help more families obtain Disability Living Allowance, Disability Carers Allowance etc, put people in touch with each other if requested, find pen pals for the younger members and help families obtain information regarding ante-natal testing.
Ehlers-Danlos Support UK – www.ehlers-danlos .org – 01252 690940 – firstname.lastname@example.org
The Ehlers-Danlos Support Group aims to inform, encourage and assist those with Ehlers-Danlos Syndrome (EDS and their family members. It produces booklets and information sheets on various aspects of EDS and a video introduced by Professor P Beighton MD PhD FRCP DCH. A National Conference is held biennially with regional days on alternate years. The Support Group endeavours to heighten awareness of EDS among the medical professionals and to support EDS research. It depends totally on voluntary donations and self-help. Members receive a newsletter ‘Fragile Links’ twice a year and can communicate with each other for mutual support and the exchange of ideas.
The Gorlin Syndrome Group aims include; the relief of sickness and the protection and preservation of the health of persons affected by Gorlin Syndrome and any related condition and their families and carers, the advancement of the education of the medical profession and the general public into Gorlin syndrome and its implications for the family, the promotion of research into the causes, effects, treatment and management of Gorlin syndrome and to disseminate the useful results thereof.
To provide information, support and advice for people with experience of cutaneous and uterine leiomyomatosis(MCUL) and renal cell carcinoma. HLRCC, also known as Reed’s Syndrome, is a condition associated with the Fumarate Hydratase gene.
Herpes Viruses Association – www.herpes.org.uk – 0845 123 2305
A registered charity, the Herpes Viruses Association provides information to members of the public, press and professionals on facial and genital herpes simplex and on shingles; publishes leaflets, a quarterly journal, arranges workshops, self-help meetings, provides 24 hour helpline service and one-to-one counselling.
The British Association for Hidradenitis Suppurativa, is a UK based organisation, dedicated to the raising of awareness, understanding and support for this chronic, debilitating skin disorder. We aim to increase public knowledge and educate the medical profession on the symptoms, treatments and severities of HS. All profits made by us go towards achieving our goals, which we hope will eventually include the development of a cure.
HITS Worldwide Family Support Network (formerly HITS (UK) is a family support network which was specifically set up in 2001 by families to support other families with Hypomelanosis of Ito because no other support group existed anywhere else in the world. Support prior to this was via letter and telephone and has been available to families since 1985. We are now supporting families in 30 countries. We are a not-for-profit voluntary group.
HITS Worldwide aims to support families via our online groups at Yahoo Groups and Facebook, Twitter, Pinterest, e-mail, telephone and by bringing families together at annual events: to try and enrich the lives of families and children affected by Hypomelanosis of Ito by facilitating and encouraging communication and linking families together; and by being a focal point offering verbal and written support.
Hyperhidrosis UK aim to give advice on line to those suffering from Hyperhidrosis, including basic treatment options available over the counter, specialist advice and where to go for treatment in the UK, which hospitals specialise in what forms of treatment and what is available on the NHS and privately. We also have some information in paper format and can send this out to all those who request it and to provide up to date information for patients and medical staff on all treatments available in the UK.
The Ichthyosis Support Group (ISG) was founded in March 1997 by a group of determined individuals who either suffer from ichthyosis themselves, or who care for children who suffer with it. The group’s main aims are to raise awareness of this debilitating skin condition, as well as to create a positive, supportive network of parents, families and health care professionals, in order to share ideas, experiences and give emotional support.
The Latex Allergy Support Group has three aims: to raise awareness of latex allergy amongst the general public, and healthcare workers in particular, to provide a national support network for those affected by latex allergy, to push for investigation into the increased incidences of the allergy, the identification of ‘at risk’ groups and the prevention of unnecessary contact with known sensitising agents.
LEPRA Health in Action is working to address unmet health needs of people affected by leprosy, tuberculosis, HIV/AIDS and other health conditions exacerbated by poverty, discrimination and stigma.
Let’s Face It offers the hand of friendship on a one to one basis, to link families, friends and professionals, to assist people with facial disfigurement to share their experiences, struggles and hopes with other friends who have ‘been there’, to help them build the courage to face life again.
LUPUS UK supports people who are diagnosed with Lupus and assists all those moving towards their diagnosis. The charity promotes public awareness regarding the Lupus condition and helps educate the medical profession. It funds research into the cause of the illness and funds a network of Lupus Nurses nationally. The charity has over 20 Regional Groups throughout the UK and provides a quarterly newsletter to over 5500 members.
Lymphoedema Support Network – www.lymphoedema.org – 020 7351 0990
Lymphoma Association (LA) – www.lymphomas.org.uk – 0808 808 5555 – email@example.com
Provides emotional support and information for lymphoma (Hodgkin’s disease and non Hodgkin’s lymphoma) patients and their families. Literature and videos available. Quarterly newsletter. National network of helpers with experience of the disease, with whom enquirers may be linked, usually by telephone. Local groups in some areas.
We exist to offer support to patients, their families and to the many associated specialists and care workers, providing updated text and fostering Marfan research projects nationally. Our slogan is “support for today with tomorrow in mind”, because we feel all three of our aims have equal importance.
We have been undertaking a national awareness campaign in schools and hospitals across the country for the past three years, as early diagnosis and appropriate treatment can avoid tragic and unnecessary loss of life due to the cardiological problems caused by Marfan syndrome.
Mastocytosis Support Group – www.ukmasto.co.uk – firstname.lastname@example.org
Our aims are to offer emotional support for sufferers, families and carers of Mastocytosis and Mast Cell related conditions in patients, to offer intellectual support for Medical Practitioners who may be unaware of current diagnostic and treatment options, to encourage understanding of the correct treatment options and the safe use of medication, to encourage understanding the causes of Mastocytosis related anaphylactic reactions, to inform and provide information for sufferers and carers, to provide information for medical professionals and to provide information for families, partners and friends particularly for the young their peers and teachers.
Myositis UK – www.myositis.org.uk – 023 8044 9708 – email@example.com
The National Eczema Society exists to eliminate the effects of eczema. It seeks to achieve this by; providing information, advice and support people with eczema and those who cae for them both locally and nationally; managing programmes of patient-focused training courses for GPs, nurses and pharmacists
The aims of the association are; to help not only those with neurofibromatosis but also their families through the employment of a nationwide network of professional Neurofibromatosis Co-ordinators (NCO’s). These NCO’s are based mainly in Genetics Departments of major hospitals and are able to provide expert advice and support for people with both Nf1 and Nf2; to help improve clinical care for patients with Nf; to encourage the establishment of mutual support groups throughout the country to help counter the feeling of isolation felt by many people affected by Nf; to provide accurate and up to date information not only to the patients themselves but also to medical professionals, healthcare workers, teachers and others concerned in the care of those affected and; to fund research.
Nodular Prurigo is the first web based support and information service in the United Kingdom for any one affected by Nodular Prurigo ( Hyde’s Disease, Prurigo Nodularis). As a self-funded project we welcome any additional information to enhance the site.
Pemphigus Vulgaris Network – www.pemphigus.org.uk – 020 8690 6462
The Pemphigus Vulgaris Network provides a forum in this country for people living with PV and those personally or professionally concerned with it. We offer people an opportunity to exchange contact details, so there is someone else to talk to when needed, help people find information they may want, and give general support. We can offer support and some information for people with other forms of pemphigus and mucous membrane pemphigoid (not bullous pemphigoid).
Pseudoxanthoma Elasticum (PXE) Support Group – www.pxe.org.uk – 01628 476687 – PXEeurope@aol.com
A registered charity, the PXE Support Group (PiXiE) exists to help, encourage and assist those with PXE and their family members; to heighten the awareness of PXE in the Medical Community, Support Services and the General Public; to link members of the Group with each other for mutual support and exchange of ideas and to provide information on the various aspects of PXE. A newsletter is produced at intervals, containing medical articles; news from members and news from PXE Support Groups in the USA and other parts of the world. This is circulated, free of charge, to all members and interested parties. A National Conference is held biennially.
Psoriasis and psoriatic arthritis Alliance (PAPAA) – www.papaa.org – 01923 672837 – firstname.lastname@example.org
The Psoriasis and psoriatic arthritis Alliance (PAPAA) is the new single identity of the Psoriatic Arthropathy Alliance and Psoriasis Support Trust The organisation 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 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.
The aim of the Psoriasis Association is to help people with psoriasis by providing up to-date information on all aspects of the condition and promoting self-help and mutual support through its members. It is the main source of information on all aspects of psoriasis in the UK. The Association works nationally to raise standards of patient care and improve education about psoriasis with both the public and all the healthcare professions.
Raynaud’s & Scleroderma Association Trust – www.raynauds.org.uk – 01270 872776 – email@example.com
The Raynaud’s Association was founded in 1982 and in 1990 changed the name to become the Raynaud’s & Scleroderma Association because of the close link between the two conditions.
The charity aims are to promote a greater awareness of Raynaud’s, scleroderma and associated conditions; to offer support advice and information to patients, carers and their families; to raise funds for research into the conditions and improve comminucation between doctors and patients and to encourage and exchange of ideas and networking betwen those with an interest in the conditions.
The Scleroderma Society was founded in 1982 to help patients who suffer from the disease and their Families. The Society is based in London with Regional Groups in areas where there is sufficient interest and membership to support one. Meetings are held to exchange ideas and experiences and a quarterly newsletter with specialist articles, regional news and contributions from members is distributed.
Shingles Support Society – www.shinglessupport.org – 0845 123 2305
A sub group of the Herpes Viruses Association, the Shingles Support Society supplies information on shingles and post-herpetic neuralgia, including self-help advice for patients and fully referenced drug treatment information for GPs, written by a consultant neurologist.
Skin Camouflage Network – www.skincamouflagenetwork.co.uk – 07851 073795 – firstname.lastname@example.org
A referral to the Camouflage Service can be done online by the a clinician or the patient
In 1994, a number of therapists, working within the NHS, shared the view that to raise standards of patient care and increase awareness of the facilities for skin camouflage amongst members of the medical profession, they should form an associaition. This became SCN, and today we have members throughout the country.
The associaition has succeeded in establishing a directory of professionally qualified members from medical, beauty therapy and academic backgrounds whose services- available both through the NHS and privately – are becoming more familiar and therefore capable of referral, to an ever- increasing number of GP’s and Dermatology and Plastic Surgey specialists.
Skin Camouflage – www.changingfaces.org
A referral to the Camouflage Service can be done online by the a clinician or the patient
Service Helpline: +44 (0) 30 0012 0276
Emotional Support Service Helpline: +44 (0) 30 0012 0275
Office: 0845 4500 275
Fax: 0845 4500 276
International Tel: +44 (0) 20 7391 9270
International Fax: +44 (0) 20 7383 3136
The Charity was launched in 1990 by Contact a Family and is an independent voluntary support group for families and adults who suffer from this syndrome. Membership is entirely free to professionals, sufferers and their families.
Sussex Community NHS Foundation Trust– www.sussexcommunity.nhs.uk
Sussex Community NHS Foundation Trust are the main provider of community NHS health and care across West Sussex, Brighton & Hove and High Weald Lewes Havens area of East Sussex.
One Call- single telephone number to access all community services. Patients can self-refer to some services, others will need HCP referral.
Telangiectasia Self-Help Group – www.telangiectasia.co.uk – 01494 528047 – email@example.com
In 1985 the Telangiectasia Self-Help Group was founded to maintain a register of sufferers and to put affected families in touch with one another. A newsletter is sent to all members informing them of developments in the treatment of this disease. An information pack is available on request.
THT provides a national helpline, THT Direct, which offers emotional support, information and advice to callers, whether living with HIV, affected by it indirectly or with questions or concerns about sexual health in general. Through a network of local centres, THT provides services such as counselling, support groups, HIV testing and STI screening, complementary therapies, information, advice and resources.
The Tuberous Sclerosis Association (TSA) provides vital practical support for people with Tuberous Sclerosis Complex (TSC) and their families and carers, and funds research to find a cure for this complex genetic condition. We do this by sharing problems and giving information; by providing education, publicity and information to promote an understanding and awareness of the problems caused by this condition and by raising funds to support research into the causes and management of Tuberous Sclerosis Complex.
UK Lichen Planus is a patient support network for people affected by any form of the skin disease Lichen Planus (LP). The group is open to members worldwide; however treatments are based on those used in the UK.
Vitiligo Society – www.vitiligosociety.co.uk – 0800 018 2631
The Society is a registered charity which aims to; offer support and understanding to people with vitiligo and to their families; to offer advice on how to cope with the condition; to promote and fund research with the objectives of establishing the causes of vitiligo and finding safe and effective treatments; to campaign for a better understanding of vitiligo among the medical profession and the general public and; to gather and distribute information about vitiligo.
Vulval Pain Society – www.vulvalpainsociety.org – 07765 947599
The Vulval Pain Society (VPS) is a confidential service for women who suffer from vulval pain due to vestibulodynia and vulvodynia and associated conditions such as lichen sclerosus, thrush, interstitial cystitis, vulval eczema and vaginismus.
The VPS is not externally funded or attached to any health service organisation.