Patient Support GroupsWe believe that all of our patients should be able to benefit from a wide range of help and support after their treatments. To help you quickly find a support group, please browse the list below. Alphabetical ListingAcne Support Group Other GroupsAll Party Parliamentary Group on Skin Acne Support GroupAims Membership benefits include lively newsletter, fact sheets, news on latest treatments + products. Contact Tel: (0870) 870 2263
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| National Contact | Medical/Professional Contact/Secretary |
| Pamelia Catlyn-Ranger | Carol Layne |
| 16 Cambridge Court | P O Box 7913 |
| Cambridge Avenue | Reading |
| Kilburn | Nr Newbury |
| London | RG6 4ZQ |
| NW6 5AB | |
| Tel: (020) 7461 9034 (after 8pm) | Tel: (01635) 253829 (anytime) |
| Fax: (020) 7461 9034 | Fax: (01635) 255560 |
| Email: pamelia_pumpkin@hotmail.com | Email: cplayne@tiscali.co.uk |
General Email: ISG@ichthyosis.co.uk
Web: www.ichthyosis.org.uk
Registered Charity N 1084783
Latex Allergy Support Group
Aims
As a self-help group, the organisations' focus is the support of members through the sharing of information and personal experiences. 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.
Contact
The Latex Allergy Support Group
P O Box 27
Filey
YO14 9YH
Helpline: 07071 225 838 (7pm - 10pm Monday - Friday)
Web: www.lasg.co.uk
LEPRA - The British Leprosy Relief Association
Aims
LEPRA's aim is the eradication of leprosy throughout the world by the provision of multidrug therapy (MDT), which is the proven cure for leprosy. It works in India, Brazil, Nepal, Madagascar, Mozambique, Bangladesh and Malawi. It also funds research into improving the quality and effectiveness of treatment, prevention of disability and rehabilitation programmes.
Contact
Mr T Vasey
LEPRA - The British Leprosy Relief Association
Fairfax House
Causton Road
Colchester CO1 1PU
Essex
Tel: (01206) 562286
Fax: (01206) 762151
Email: lepra@lepra.org.uk
Web: www.lepra.org.uk
Let's Face It
Aims
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.
Contact
Mrs C Piff
Let's Face It
72 Victoria Avenue
Westgate on Sea
Kent CT88BH
Tel: (01843) 833724
Fax: (01843) 835695
Email: julialetsfaceit@aol.com
Email: chrisletsfaceit@aol.com
Web: www.letsfaceit.force9.co.uk
LUPUS UK
Aims
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 provides a quarterly newsletter to it's 8000 members.
Awards Available None
Contact
LUPUS UK
St James House
Eastern Road
Romford
Essex
RM1 3NH
Tel: (01708) 731251
Fax: (01708) 731252
Web: www.lupusuk.com
West Midlands Lupus Group
8 Legge Lane
Coseley
West Midlands
WV14 8RQ
Tel/Fax: 01902 498236
Web: www.westmidlandslupus.co.uk
Lymphoma Association (LA)
Aims
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.
Contact
Reta Johnstone
Lymphoma Association
PO Box 386
Aylesbury HP20 2GA
Bucks
Helpline: (0808) 808 5555 Mon - Fri 9 am - 5 pm
Office: (01296) 619400 Mon - Fri 9 am - 5 pm
Fax: (01296) 619414
Web: www.lymphoma.org.uk
Marfan Association UK
Aims
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.
Contact
Mrs Diane L Rust
Chairman/Support Co-ordinator
Marfan Association UK
Rochester House
5 Aldershot Road
Fleet
Hampshire GU51 3NG
Tel: (01252) 810472 (Office hours)
Fax: (01252) 810473
Ans: (01252) 617320
Email: marfan@tinyonline.co.uk
Web: www.marfan.org.uk
Myositis Support Group
Contact
Irene Oakley
Dermatomyositis and Polymositis Support Group
146 Newtown Road
Woolston
Southampton
Hampshire SO19 9HR
Tel: (023) 8044 9708
Fax: (023) 8039 6402
Email: info@myositis.org.uk
Web: www.myositis.org.uk
National Eczema Society
Aims
The National Eczema Society exists to eliminate the effects of eczema. It seeks to achieve this by:
- providing information, advice and support to people with eczema and those who care for them both locally and nationally (details from Colette Hoare);
- managing programmes of patient-focused training courses for GPs, nurses and pharmacists (full information from Sue Ward);
- encouraging and supporting research into the causes, effects and treatment of eczema;
- Providing staff and facilities to its subsidiary, the Skin Care Campaign, an alliance of skin patient organisations, companies and others interested in skin health (see separate entry)
Contact
National Eczema Society
Hill House
Highgate Hill
London N19 5NA
Tel: (020) 7281 3553 ext 206
Fax: (020) 7281 6395
Helpline: (0870) 241 3604 (Mon-Fri 1-4pm)
Email: helpline@eczema.org
Email: eczemapro@eczema.org
Web: www.eczema.org
National Lichen Sclerosus Support Group
Contact
Ms Fabia Brackenbury
P O Box 7600
Hungerford
RG17 7XD
Calls by appointment only
Email: fabia.ivy@pop3.hiway.co.uk
The Neurofibromatosis Association
Aims
Founded in 1981, 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;
- to fund research.
Contact
Mrs Roberta Tweedy
Chief Executive
The Neurofibromatosis Association
Quayside House
8 High Street
Kingston upon Thames
Surrey KT1 1HL
Tel: (020) 8439 1234
Fax: (020) 8439 1200
Email: nfa@zetnet.co.uk
Web: www.nfa.zetnet.co.uk
The Pemphigus Vulgaris Network
Aims
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). The Network has no funding and relies entirely on voluntary donations to continue. Correspondents should send an sae. We are affiliated to the American National Pemphigus Foundation and share a website with them
Contact
Ms Siri Lowe
The Pemphigus Vulgaris Network
Flat C
26 St Germans Road
London SE23 1RJ
Tel: (020) 8690 6462
Web: www.pemphigus.org
Primary Immunodeficiency Association (PIA)
Aims
To improve the quality of life of all people with primary immunodeficiencies. In order that we might achieve this we have the following aims:
- To promote awareness and early diagnosis of the various primary immunodeficiencies
- To ensure that all those affected have access to the best possible treatment
- To provide information and support to people with primary immunodeficiencies
- To encourage and support original research.
Awards Available
Research Grants
Contact
David Watters
The Primary Immunodeficiency Association
Alliance House
12 Caxton Street
London SW1H 0QS
Tel: (020) 7976 7640
Fax: (020) 7976 7641
Email: info@pia.org.uk
Web: www.pia.org.uk
The Pseudoxanthoma Elasticum(PXE) Support Group
Aims
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.
Contact
Miss Elspeth M W Lax, or
Wg Cdr Bernard Lax MBE
15 Mead Close
Marlow
Bucks SL7 1HR
Tel: (01628) 476687
Fax: (01628) 486024
Email: PXEeurope@aol.com
Web: www.pxe.org.uk
The Psoriasis Association
Aims
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.
Contact
Gladys Edwards
Chief Executive
The Psoriasis Association
7 Milton Street
Northampton NN2 7JG
Tel: (01604) 711129
Fax: (01604) 792894
Email: mail@psoriasis.demon.co.uk
Web: www.psoriasis-association.org.uk
Psoriatic Arthropathy Alliance
Aims
The Psoriatic Arthropathy Alliance (PAA), established in 1993, is a registered national charity, dedicated to raising awareness and helping people with Psoriatic Arthritis and it's associated skin disorder know as psoriasis. The PAA exists to raise awareness, support, educate, promote, advocate, campaign and inform.
Awards Available None
Contact
Mr David Chandler/Mrs Julie Chandler
The Psoriatic Arthropathy Alliance
PO Box 111
St Albans
Herts AL2 3JQ
Tel: (0870) 7703212
Fax: Same
Business Line: (0870) 7703213
Email: info@paalliance.org
Web: www.paalliance.org
Raynaud's & Scleroderma Association Trust
Aims
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 aims are to promote a greater awareness of Raynaud's, scleroderma and associated conditions; to improve communication between doctors and patients; to put patients in touch with each other in order to exchange ideas and information; to offer advice and support to sufferers and their carers and to raise funds for research and welfare projects. It holds regional meetings at venues nation wide and an annual conference is held in September/October. A helpline is available for information and advice.
Awards Available
Grants are given to specialist centres relating to Raynaud's and Scleroderma.
Contact
Mrs Anne Mawdsley MBE
Raynaud's & Scleroderma Association Trust
112 Crewe Road
Alsager
Cheshire ST7 2JA
Tel: (01270) 872776
Fax: (01270) 883556
Email: info@raynauds.org.uk
Web: www.raynauds.org.uk
Opening hours: 0900 - 1700 Monday to Friday inclusive.
Outside these hours an answering machine is in operation
Free phone: (0800) 917 2494
The Scleroderma Society
Aims
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.
Awards Available
The Society funds medical research into Scleroderma.
Contact
Kim Fligelstone
Chair
The Scleroderma Society
3 Caple Road
Harlesden
NW10 8AB
Tel: (020) 8961 4912
Email: kim@sclerodermasociety.co.uk
Shingles Support Society
Aims
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. Send SAE (and donation please) for 19 pages.
Contact
Miss Marian Nicholson
Shingles Support Society
41 North Road
London N7 9DP
Tel: (020) 7607 9661 (Professional calls only)
Web: www.herpes.org.uk/shingles
Telangiectasia Self Help Group
Aims
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. Please enclose a S.A.E.
Awards Available None
Contact
Mrs D M Lawson
Co-ordinator/Organiser
Telangiectasia Self-Help Group
39 Sunny Croft
Downley
High Wycombe HP13 5UQ
Tel: (01494) 528047
Fax None
Email: info@telangiectasia.co.uk
Web: www.telangiectasia.co.uk
Terrence Higgins Trust
Aims
The Terrence Higgins Trust was set up in 1982 as one of the first national voluntary organisations to respond on all aspects of the AIDS and HIV health crisis.
The Trust's Mission is to provide and promote a diversity of radical and effective community-based responses to HIV and AIDS through health promotion programmes, services and care, and by influencing society to create a greater understanding of the social impact of HIV and AIDS and of the needs of all those affected. The trust also provides welfare, legal and counselling help and support to people affected by AIDS and HIV infection and their partners, friends and families.
Contact
Terrence Higgins Trust
52 - 54 Gray's Inn Road
London WC1X 8JU
Tel: (020) 7831 0330
Direct Line: (0845) 122 1200 (Mon - Fri, 11 - 8)
Helpline: (020) 7242 1010 (12 noon - 10 pm daily)
Fax: (020) 7816 4552
Email: info@tht.org.uk
Web: www.tht.org.uk
Also Regional centres at:
Brighton (01273) 764200
W Sussex (01903) 719090
Oxford (01865) 243389
Coventry (024) 7622 9292
Leeds (0113) 200 8180
Birmingham (0121) 694 6440
Bath (01225) 444347
Bristol (0117) 955 1000
London (West) (020) 7792 1200
Swansea (01792) 477540
Eastbourne (01323) 649927
London (South) (020) 8678 6686
Tuberous Sclerosis Association
Aims
The Tuberous Sclerosis Association aims to provide support for parents and sufferers, sharing problems and giving information; by providing education, publicity and information to promote an understanding and awareness of the problems caused by this condition; to promote fund raising to support research into the causes and management of Tuberous Sclerosis. We also supply a wide range of literature, advice, Benevolent Fund, support from TS Specialist Advisers , 6 specialist TS clinics, medical advisers and family weekend breaks.
Contact
Ms Janet Medcalf
Tuberous Sclerosis Association
P O Box 9644
Bromsgrove
Worcester B61 0FP
Tel: (01527) 871898
Fax: (01527) 579452
Email: support@tuberous-sclerosis.org
Web: www.tuberous-sclerosis.org
The Vitiligo Society
Aims
The Society is a registered charity which aims t
- 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
- To gather and distribute information about vitiligo
Contact
Mrs Marion Lesage
General Manager
The Vitiligo Society
125 Kennington Road
London SE11 6SF
Tel: (020) 7840 0855
Freephone: (0800) 018 2631
Fax: (020) 7840 0866
Email: all@vitiligosociety.org.uk
Web: www.vitiligosociety.org.uk
Wessex Cancer Trust - SCIN
(Skin Cancer Information Network) MARC'S LINE (Melanoma and Related Cancers of the Skin)
Aims
Marc's Line aims to be of value to patients and their families, health professionals. teachers and others involved in education or prevention of skin cancer. It produces leaflets and information sheets on various types of skin cancer and on sun protection strategies. It has a professional nurse network of voluntary nursing contacts offering psycho-social support for patients and their families living with melanoma. Marc's Line is funded by Wessex Cancer Trust, who offer a counselling service to those living in the Wessex area. Marc's Line also have Professional/Public Education Programmes, for more information on these please contact Jane Freak at the details below.
Contact
Jane Freak
Clinical Nurse Specialist in Skin Cancer Prevention
Marc's Line Resource Centre
Dermatology Treatment Centre
Level 3
Salisbury District Hospital
Salisbury
Wiltshire SP2 8BJ
Tel: (01722) 415071
Fax: (01722) 415071
Web: www.k-web.co.uk/charity/wct/wct.html
Other Groups
From time to time, other bodies not listed above may make money available for research in dermatology. These are usually advertised in the "news and notices" section of the BJD.
All Party Parliamentary Group on Skin
Aims
The All Party Parliamentary Group on Skin (APPGS) was established in 1994. It has a large and active membership including Members of Parliament from all political parties, Members of the House of Lords, health professionals, patient groups and pharmaceutical companies. The Group was set up as a result of a campaign to raise awareness of skin issues in Parliament by the National Eczema Society. The Society now provides support and resource for the Skin Care Campaign, which is the organisation that brings together most of the main skin patient support groups, and the APPGS involves all interested parties across the skin area who are represented in some numbers.
The APPGS is seeking progress on a number of areas:
- increasing understanding of the nature, extent, causes and problems associated with all kinds of skin disease;
- working to improve delivery of treatment to those with skin conditions;
- working to educate Government as to the ways in which treatment management can be improved and made more efficient;
- examining other socio-economic and environmental factors in skin disease, such as occupational factors.
More money is not necessarily always the answer - often it is a question of identifying problems and using imaginative and thoughtful solutions to solve them. This is what the group seeks to achieve.
The Group holds a small number of exceptionally well-attended meetings each year. These offer MPs and others the opportunity to understand more about different types of skin disease. Fifteen per cent of all GP patient episodes are skin related - it comprises one of the greatest calls on GP time and yet training for GPs in this area is scarce, if existent at all.
Contact
Berkeley Greenwood
Portcullis Research
26 Cadogan Square
London SW1X 0JP
Tel: (020) 8246 6428
Fax: (020) 7591 4831
Email: APPGS@portcullisresearch.com
Skin Care Campaign
Aims
The Skin Care Campaign (SCC) is an umbrella organisation representing the interests of all people with skin diseases in the UK. Membership is open to all UK national skin patient organisations. The SCC enjoys the support of health professionals concerned with dermatology, companies and other organisations with a common interest in skin health. It is a subsidiary of the National Eczema Society. The aims of the SCC are:
- To work for the improvement of health care for people suffering from skin disease. To this end, it makes recommendations for improvements in dermatology services to Parliament through the Associate Parliamentary Group on Skin (APGS), and directly to the Department of Health and to other health service providers. Issues addressed are those of common concern to all or most of its member organisations.
- To educate and inform the public and others about skin diseases and their treatment through:
- Media campaigns directed at health professionals and the public, to raise awareness of dermatology within the medical profession, to educate and inform health professionals and the public about skin diseases and their prevention and treatment, and to undermine the stigma associated with skin disease; and
- A programme of Skin Information Days (SIDs) held throughout the United Kingdom. SIDs are open to the public, free of charge. Those administering them ensure that all member organisations have the opportunity to attend and that those that cannot attend are properly represented.
- To support other organisations in order to pursue these objects.
Contact
Peter Lapsley
Chief Executive
Skin Care Campaign
Hill House
Highgate Hill
London N19 5NA
Tel: (020) 7281 3553 x209
Fax: (020) 7281 6395
Email: plapsley@eczema.org
Web: www.skincarecampaign.org