Patient Support Groups

Aims

The British Association of Skin Camouflage is a non-profit making organisation formed to promote the awareness of remedial skin camouflage, and through its members offers this valuable service to as many patients as possible nationwide.

The aim of the Association is 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 3671
Chester
Cheshire
CH1 9QH

Tel: 01254 703 107
Email: [email protected]
Web: www.skin-camouflage.net

Aims

• Support CMN sufferers and their families
• Raise awareness of the condition
• To help fund CMN research carried out in London

Congenital Melanocytic Naevus is typically presents as a large, brown hairy mark that covers part of the body and which is present at birth. Sufferers, who are mostly children, can also develop smaller marks throughout life.

‘Caring Matters Now’ supports anyone who suffers from CMN, whether children or adults. This service is available nationally and is provided free of charge.

Contact

Caring Matters Now
PO Box 732
Cambridge
CB1 0QF

Tel: 07786 458883
Email: [email protected]
Web: www.caringmattersnow.co.uk

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

Changing Faces
The Squire Centre
33-37 University Street
London WC1E 6JN

Tel: 0207 391 9270
Fax: 0845 4500 276
Email: [email protected]
Web: www.changingfaces.org.uk
There is also a website aimed specifically at young people: www.iface.org.uk

Aims

Changing Faces is now the official home of skin camouflage. The Skin Camouflage programme was established in 1975 by the British Red Cross and since then it has helped tens of thousands of people to grow in confidence and independence.

Trained volunteers can teach people how to self-apply specialist cover creams to provide effective, long-lasting and waterproof cover for a variety of disfiguring skin conditions including scarring, rosacea, vitiligo, leg veins and many other dermatological conditions.

The creams are fully water-proof and are available on prescription. This service is available to women, men and children in England and Northern Ireland.

Contact

Tel: 0300 012 0276
Email: [email protected]
http://www.changingfaces.org.uk/Skin-Camouflage

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

Gorlin Syndrome Group
11 Blackberry Way
Penwortham
Preston, Lancs
PR1 9LQ

Tel: 01772 496849
Email: [email protected]
Web: www.gorlingroup.org

For further information and support relating to Hidradenitis Suppurativa, please use the following links:

British Association of Dermatologists (BAD)

https://www.bad.org.uk/pils/hidradenitis-suppurativa/

British Skin Foundation (BSF)

https://knowyourskin.britishskinfoundation.org.uk/condition/hidradenitis-suppurativa/

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. They can also advise as to which hospitals specialise in what forms of treatment and what is available on the NHS and privately.

The organisation has some information in paper format and can send this out to all those who request it.

The Support Group also aims to provide up to date information for patients and medical staff on all treatments available in the UK.

Contact

Mrs Julie Halford, Specialist Nurse in Sclerotherapy and Hyperhydrosis
Website: www.hyperhidrosisuk.org
email: [email protected]

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’ and to help them build the courage to face life again.

Contact

Let’s Face It
72 Victoria Avenue
Westgate on Sea
Kent, CT8 8BH

Tel: 01843 833724
Fax: 01843 835695
Hours: 9am – 9pm Seven days a week
Email: [email protected]
Email: [email protected]
Web: www.lets-face-it.org.uk

The Lymphoedema Support Network (LSN) takes the lead role in educating and supporting other patients with this condition by providing a high standard of information and promoting self-help. Since its inception in 1991, when there was very little information or help available for patients, the LSN has evolved into an independent and influential charity. It is the only national patient-led organisation offering information and support to people with this condition and has a unique understanding of the patients’ experience.

Contact

Lymphoedema Support Network
St Luke’s Crypt
Syndey Street
London
SW3 6NH

Tel: 020 7351 0990
Fax: 020 7349 9809
Web: www.lymphoedema.org
Email: [email protected]

Aims

The Neurofibromatosis Association was founded in 1981 and changed its name to The Neuro Foundation in 2010. 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;

• help improve clinical care for patients with Nf;

• encourage the establishment of mutual support groups throughout the country to help counter the feeling of isolation felt by many people affected by Nf;

• 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;

• fund research.

Contact

The Neuro Foundation
Quayside House
38 High Street
Kingston upon Thames
Surrey KT1 1HL

Tel: 020 8439 1234
Fax: 020 8439 1200
Email: [email protected]
Web: www.nfauk.org

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 they 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.

Aims

• To establish a body to which all skin camouflage practitioners could belong, and through which knowledge and expertise could be networked and share
• To develop a directory of professional, qualified camouflage therapist
• To raise awareness amongst the medical profession, pharmacists and patients as to the availabilty of skin camouflage
• To raise and maintain professional standards through improved educational facilities, study days and seminars.
• To provide a professional news journal, enabling members to keep abreast of current issues.
• To form links with all support groups thereby assisting patients who require additional help and so to improve the facilities available to patients.

Contact

SCN
56 Princes Meadow
Gosforth, Newcastle Upon Tyne
NE3 4RZ

Helpline tel: 07851 073795 (After 6pm)
Email: [email protected]
Web: www.skincamouflagenetwork.org.uk

Aims

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 raising funds to support research into the causes and management of Tuberous Sclerosis Complex.

Contact

Tuberous Sclerosis Association
PO Box 8001
Derby
DE1 0YA

Tel: 01332 290734
Email: [email protected]
Web: www.tuberous-sclerosis.org

Aims

Marc’s Line aims to be of value to patients and their families, health professionals. teachers and others involved in the 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.

Contact

MARC’s Line Resource Centre
Dermatology Treatment Centre
Level 3
Salisbury District Hospital
Salisbury
Wiltshire SP2 8BJ

Tel: 01722 415071
Web: www.wessexcancer.org
Email: [email protected]

The XP support group was founded in 1999 by parents of a child with XP. The group aims to relieve the needs of persons with XP and their families. The group raises funds for research, gives grants for UV protective equipment and products and assists families to attend night time camps in the UK or respite in a protective environment.

Contact

XP Support Group
Instron House
Coronation Road
High Wycombe
Bucks
HP12 3SY

Tel: 01494 456 192
Web: www.xpsupportgroup.org.uk
Email: [email protected]