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The BSDS hope that the following patient support groups will be relevant to those viewing the site.
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
PO Box 202
Macclesfield
SK11 6FP
Tel: (01625) 871 129
Email: basc9@hotmail.com or info@skin-camouflage.net
Web: www.skin-camouflage.net
British Red Cross
Aims
The British Red Cross Skin Camouflage Service rebuilds confidence by teaching the application of prescribable cover creams to provide effective, long-lasting and waterproof cover for disfiguring skin conditions such as scarring, rosacea, vitiligo, leg veins and many other dermatological conditions. The service is available to men, women and children medical referral from a consultant, GP or dermatology nurse specialist.
The service is available nationally and is provided free of charge although the Red Cross is grateful for donations. Information on clinics can be obtained from the local Red Cross office or see contact below.
Contact
Ms Sheila Hannay
Community Services
British Red Cross
44 Moorfields
London
EC2Y 9AL
Tel: (0141) 981 4000
Email: shannay@redcross.org.uk
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
Changing Faces Centre
33-37 University Street
London WC1E 6JN
Tel: (0845) 4500 275
Fax: (0845) 4500 276
Email: info@changingfaces.org.uk
Web: www.changingfaces.org.uk
Gorlin Syndrome Group
Gorlin syndrome is characterised by the development of multiple jaw cysts (keratocysts) and/or basal cell carcinomas (BCCs). Most individuals have pits (small depressions on the palms of the hands and soles of the feet.
The Gorlin Syndrome gene also has an effect on the development of the skeletal system. Height, shape of the ribs and bones, and the size of the skull can all be affected.
Aims
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.
Information and advice is available via the website, regular newsletters, telephone helpline and an annual patient conference. The group is backed by a full medical advisory board.
Contact
Margaret Costello
Gorlin Syndrome Group
11 Blackberry Way
Penwortham
Preston
PR1 9LQ
Tel: 01772 496849
Email: info@gorlingroup.org
Web: www.gorlingroup.org
Hidradenitis Suppurativa
http://hs-foundation.org
This is a site which has useful information for patients/healthcare professionals regarding this condition. It also fosters and encourages research.
Hyperhidrosis Support Group
Aims
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.
To provide up to date information for patients and medical staff on all treatments available in the UK.
Contact
Mrs Julie Halford
Website: www.hyperhidrosisuk.org
email: info@hyperhidrosisuk.org
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
Hours: 9am - 9pm Seven days a week
Email: julialetsfaceit@aol.com
Email: chrisletsfaceit@aol.com
Web: www.lets-face-it.org.uk
Lymphoedema Support Network
Contact
Mrs B Finch
St Luke's Crypt
Syndey Street
London
SW3 6NH
Tel: 020 7351 4480
Fax: 020 7349 9809
Web: www.lymphoedema.org/lsn
Melanoma Support SW Scotland
Contact
Leigh Smith TD RGN
17 Cairnhill Road
Bearsden
Dunbartonshire
G61 1AU
Tel: (0141) 942 4068
Web: www.icarus-support.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.
Awards Available
Grants are made when funds are available and advertised in the Lancet. The grants are available only for Nf research and subject to peer review.
Contact
Mrs Roberta Tweedy
Chief Executive
The Neurofibromatosis Association
Quayside House
38 High Street
Kingston upon Thames
Surrey KT1 1HL
Tel: (020) 8439 1234
Fax: (020) 8439 1200
Email: nfa@zetnet.co.uk
Web: www.nfa.uk.org
Skin Camouflage Network
Aims
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 camoufalge 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, Red Cross 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.
SCN membership is open to all practitioners and offers study days, news journals, support and guidance from colleagues.
Objectives
1.To establish a body to which all skin camouflage practitioners could belong, and through which knowledge and expertise could be networked and shared
2.To develop a directory of professional, qualified camouflage therapist
3. To raise awareness amongst the medical profession, pharmacists and patients as to the availabilty of skin camouflage
4. To raise and maintain professional standards through improved educational facilities, study days and seminars.
5. To provide a professional news journal, enabling members to keep abreast of current issues.
6. To form links with all support groups therby assisting patients who require additional help.
7.... and so to improve the facilities available to patients
Contact
SCN
PO Box 276
Newcastle Upon Tyne
NE3 4XR
Helpline tel: 07799 738599 (After 6pm)
Email: enquires@skincamouflagenetwork.org.uk
Web: www.skincamouflagenetwork.co.uk
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
Mrs Fiona McGlynn
Head of Development and Support Services
Tuberous Sclerosis Association
PO Box 13938
Birmingham
B45 5BF
Ms Diane Sansom
Head of Administration
Tuberous Sclerosis Association
PO Box 12979
Barnt Green
Birmingham
B45 5AN
Tel: 05602 420809
Tel/Fax: 0121 445 6970
Email: development-support@tuberous-sclerosis.org / diane.sanson@tuberous-sclerosis.org
Web: www.tuberous-sclerosis.org
Tel: 07747 417 670
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
Jo Allum / Linda Burt
Clinical Nurses Specialists in Skin Cancer Prevention
Marc's Line Resource Centre
Dermatology Treatment Centre
Level 2
Salisbury District Hospital
Salisbury
Wiltshire SP2 8BJ
Tel: (01722) 415071
Fax: (01722) 415071
Web: www.wessexcancer.org
XP Support Group
Contact
Ms Sandra Webb
XP Support Group
2 Strawberry Close
Prestwood
Great Missenden
Bucks
HP16 0SG
Tel: 01494 890 891
Email: info@xpsupportgroup.org.uk
Web: www.xpsupportgroup.org.uk
For more information on patient support groups published by the British Association of Dermatologists, please visit: http://www.bad.org.uk//site/575/default.aspx
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