Patient Support Groups

We 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 Listing

Acne Support Group
Allergy UK
Behcet's Syndrome Society
British Association of Cancer United Patients (Cancer BACUP)
British Association of Skin Camouflage
British Red Cross
Caring Matters Now (CMN) The Congenital Melanocytic Naevus Support Group
Changing Faces
Dariers Disease Support Group
Dystrophic Epidermolysis Bullosa Research Association (DEBRA)
Ectodermal Dysplasia Society
Ehlers-Danlos Support Group
Hairline International
Herpes Viruses Association
Ichthyosis Support Group
Latex Allergy Support Group
LEPRA - The British Leprosy Relief Association
Let's Face It
LUPUS UK
Lymphoma Association (LA)
Marfan Association UK
Myositis Support Group
National Eczema Society
National Lichen Sclerosus Support Group
Neurofibromatosis Association
Pemphigus Vulgaris Network
Primary Immunodeficiency Association (PIA)
Pseudoxanthoma Elasticum (PXE) Support Group
Psoriasis Association
Psoriatic Arthropathy Alliance
Raynaud's & Scleroderma Association Trust
Scleroderma Society
Shingles Support Group
Telangiectasia Self Help Group
Terrence Higgins Trust
Tuberous Sclerosis Association
Vitiligo Society
Wessex Cancer Trust Marc's Line (Melanoma and Related Cancers of the Skin)

Other Groups

All Party Parliamentary Group on Skin
Skin Care Campaign


Acne Support Group

Aims
The Acne Support Group provides information and support to anyone affected by acne or rosacea. The group works with health professionals to help improve the quality of information given to patients.

Membership benefits include lively newsletter, fact sheets, news on latest treatments + products.

Contact
Alison Dudley
Acne Support Group
P O Box 9
Newquay
TR9 6WG

Tel: (0870) 870 2263
Web: www.stopspots.org


Allergy UK

Aims
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.

The range of services provided include
Factsheets and advice from a Health Advisory Panel for members.
Seal of Approval - allergy friendly products.
Translation cards for people going abroad.
Support Contacts.
A helpline which operates between 9am and 9pm Weekdays and 10am - 1pm Weekends.
Diploma courses and a Postgraduate Certificate for healthcare professionals.

Contact
Peter Simmons, Information Manager
Allergy UK
Deepdene House
30 Bellegrove Road
Welling, Kent
DA16 3PY
Charity Reg. N 1003726

Tel: (020) 8303 8525
Fax: (020) 8303 8792
Helpline: (020) 8303 8583 (Mon-Fri 9am-9pm, Sat-Sun 10am-1pm)
Email: info@allergyuk.org
Web: www.allergyuk.org


Behcet's Syndrome Society

Aims
The society, a registered Charity run by unpaid volunteers, exists to provide contact and support to sufferers from Behcet's Syndrome. Through its three help lines, leaflets and periodic newsletters it provides information and counselling to over 1350 members. Charitable Aid and Research Grants are made from time to time.

Contact
Georgina Seaman
Behcet's Syndrome Society
3 Church Close
Lambourn
Hungerford RG17 8PU
Berks

Tel: (01488) 71116
Email: info@behcets-society.fsnet.co.uk
Web: www.behcets.org.uk


British Association of Cancer United Patients (CancerBACUP)

Aims
CancerBACUP aims to help people live with cancer by providing up-to-date information and support. We publish more than 100 factsheets and 58 booklets.

All CancerBACUP's services are confidential and free to people with cancer, their relatives and friends:
- cancer nurses respond to enquiries by letter and telephone freeline 0808 800 1234, (Mon-Fri, 9 am-7 pm. Not including Bank Holidays)
- a wide range of booklets on cancer
- an interactive website (see below)

Contact
Joanne Rule
Cancer BACUP
3 Bath Place
Rivington Street
London EC2A 3JR

Tel: (020) 7696 9003
Fax: (020) 7696 9002
Email: info@cancerbacup.org
Web: www.cancerbacup.org.uk


British Association of Skin Camouflage

Aims
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.

We aim to give first class training to interested and dedicated individuals, be they from medical or beauty backgrounds, in order to increase the amount of available practitioners, and improve the standard of service given. 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.

Contact
The British Association of Skin Camouflage
C/o Resources for Business
South Park Road
Macclesfield SK11 6SH

Tel: (01625) 267880
Fax: (01625) 267879
Email: thorpm@resources.demon.co.uk
Web: www.skin-camouflage.net


British Red Cross

Aims
The aim of the British Red Cross Skin Camouflage Service is to assist people with a Disfigurement to cope in their daily lives, with the aid of simple skin camouflage techniques.

The service is available to men, women and children through medical referral from a consultant or GP. Camouflage creams are effective in reducing the impact of scarring, rosacea, birthmarks, vitiligo, tattoos etc. on the face, limbs and torso.

The service is available nationally and is provided free of charge to the patient. The creams are normally available on prescription. Information on clinics can be obtained from the local Branch Headquarters of the British Red Cross or see contact below.

Contact
Cathy Kingsbury
UK Service Development, Community Services Unit
British Red Cross
9 Grosvenor Crescent
London SW1X 7EJ

Tel: (020) 7201 5172
Fax: (020) 7235 7447
Web: www.redcross.org.uk

 

Caring Matters Now (CMN)
The Congenital Melanocytic Naevus Support Group 

Aims
1. Support the CMN sufferers and their families
2. Raise awareness of the condition
3. To help fund CMN research carried out in London

Congenital Melanocytic Naevus consists of a huge, brown, hairy mark that covers a part of the body, this is present at birth. The sufferers, mostly children, can also develop smaller marks throughout life.

'Caring Matters Now' is for anyone who suffers from CMN whether it's children or adults. This service is available nationally and is provided free of charge.

Contact
Jodi Unsworth
Caring Matters Now
Bridge Chapel Centre
Heath Road
Liverpool L19 4XR

Tel: (0151) 281 9716
Fax: (0151) 281 9717
Web: www.caringmattersnow.co.uk
24 Hour Line: (07970) 498787


Changing Faces 

Aims
Changing Faces is a National organisation which seeks a better future for children and adults who have disfigurements. Changing Faces supports and represents people with disfigurements by:

  • Helping to build their self-esteem and self-confidence
  • Ensuring effective support and rehabilitation
  • Ensuring equal opportunities and fair treatment

Objectives

  • To provide direct help for children, young people and adults who have disfigurements
  • To promote health and social care which address the psychological and social effect of disfigurement
  • To public awareness and equal opportunities

The charity also publishes a range of self help booklets and videos and works with the Centre for Appearance and Disfigurement (based at the University of the West of England in Bristol) on research projects.  Changing Faces now has a new booklet available "Managing the Social Effects of Medical Skin Conditions".

Contact
Mr James Partridge, Executive Director
Changing Faces
1 & 2 Junction Mews
Paddington
London W2 1PN

Tel: (020) 7706 4232
Fax: (020) 7706 4234
Email: info@changingfaces.co.uk
Web: www.changingfaces.co.uk


Darier's Disease Support Group 

Aims
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. The group is also in contact with a members of the Darier's Group in the Netherlands.

Contact
Mrs J Davies
Darier's Disease Support Group
P O Box 36
Milford Haven
Dyfed
SA73 3YF

Tel: (01646) 695055
Web: www.dariers.8m.com


DEBRA

Aims
The aims of DEBRA are to fund research into Epidermolysis Bullosa, to promote the welfare of people with the condition and to educate the public and professional audiences about EB.

DEBRA funds 4 specialist nurses for children with EB, together with a specialist dietician who are based at Great Ormond Street Hospital but have a nationwide brief. In addition, four nurse advisors for adults with EB are employed and a social worker. Contact can be made with these professional staff either directly or via the DEBRA office.

DEBRA publishes a wide range of information materials, some aimed at patients and others for the professional audience. All are free and can be supplied in quantity to dermatologists.

Contact
Mr John Dart
DEBRA
Debra House
13 Wellington Business Park
Dukes Ride, Crowthorne
Berkshire RG45 6LS

Tel: (01344) 771961
Fax: (01344) 762661
Email: debra.uk@btinternet.com
Web: www.debra.org.uk


Ectodermal Dysplasia Society

Aims
We aim to

  • obtain answers from Medical professionals to members' specific questions
  • support families when they approach organisations such as Local Authorities, Social Services. etc. by putting together a personal report explaining very simply how ED affects them
  • liaise with Head Teachers, Health Authorities and medical professionals
  • help families get the right care for their child in schools, such as full or part time carers, fans, air-conditioning etc.
  • help more families obtain Disability Living Allowance, Disability Carers Allowance etc
  • support members in their fundraising
  • put people in touch with each other if requested
  • find pen pals for the younger members
  • help families obtain information regarding ante-natal testing
  • put the society on the databases of Health Authorities, NHS Trusts, Health Organisations etc.

The Ectodermal Dysplasia Society produces a Newsletter four times a year and has its own website (see below).

Contact
Mrs Diana Perry
Ectodermal Dysplasia Society
108 Charlton Lane
Cheltenham
Gloucester
GL53 9EA

Tel: (01242) 261332
Fax: (01242) 261332
Email: diana@ectodermaldysplasia.org
Web: www.ectodermaldysplasia.org


Ehlers-Danlos Support Group  

Aims
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 aspect of EDS and a video introduced by Professor P Beighton MD PhD FRCP DCH. A newsletter 'Fragile Links' and audio tapes are also available. 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 can communicate with each other for mutual support and the exchange of ideas.

Contact
Mr Ashley Greene
Director
Ehlers-Danlos Support Group
P O Box 335
Farnham GU10 1XJ

Tel: (01252) 690940
Email: info@ehlers-danlos.org
Web: www.ehlers-danlos.org


Hairline International  

Aims
Hairline International - The Alopecia Patients' Society is an international network of patients who have lost, or are losing, their hair through scalp disease or thinning conditions. The society provides information on medical treatment, mutual support and practical help. It is the only national alopecia patients' support group.

Contact
Ms Elizabeth Steel
Hairline International - The Alopecia Patients' Society
Lyons Court
1668 High Street
Knowle
West Midlands B93 0LY

Tel: (01564) 775281
Tel/Fax: (01564) 782270
Web: www.hairlineinternational.co.uk


The Herpes Viruses Association 

Aims
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. Send SAE for information about the services provided.

Contact
Miss Marian Nicholson
Herpes Viruses Association
41 North Road
London N7 9DP

Tel: (020) 7607 9661 (for professional calls)
Helpline: (020) 7609 9061 (for advice and information to public)
Fax: On request
Web: www.herpes.org.uk


Ichthyosis Support Group  

Aims
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.

We have a Medical Advisory Board (MAB) to assist with the production of literature and to answer any medical questions that the group receives. As the group develops, ultimately we hope to raise funds for supporting research into ichthyosis.

We issue all our members with a quarterly newsletter consisting of information, including any recent developments, a question and answer section, and personal stories. We also run a pen pal scheme through the newsletter, to encourage ichthyosis sufferers to make contact with others in a similar situation to themselves.

We produce an information pack, with literature on various forms of ichthyosis, skin care tips and benefit information.

The groups 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.

Contact

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