Patient Support Groups

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The following is an alphabetical list of national, regional and local patient support groups for those suffering from skin disease. They are often run by volunteers who suffer from the disease themselves, and many patients find it enormously valuable to have such contact with others both for support and for practical help. They also often support research efforts. If no support group exists for the disease in which you are involved, perhaps it may be worth considering starting up such a group.

Click here  to download a list the latest Dermatology Patient Support Groups and their contact details

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Who we are
The Alfie Milne Lymphangiomatosis Trust was founded in 2011 and became a registered charity in 2012.
Lymphangiomatosis is the name given to a rare congenital disorder of lymphatic channels which affects their size, shape, location and function. If the disorder affects both lymphatic channels and blood vessels, it may be referred to as a lymphovenous malformation.

We work closely with two other organisations the Lymphangiomatosis and Gorham’s Disease Alliance – Europe (LGDA - E) and their sister organisation in the US, the LGDA, helping our worldwide community.  We have access to an International Patient Registry and encourage our patients to enrol and share their information.

What we do

Our aims are to promote public awareness of this life limiting and potentially, life threatening, disease as well as to provide a support network for patients, their families and health care professionals.  We offer a Facebook group to connect patients around the world.
Our medical advisor assists with the production of literature and helps to answer any medical questions that we receive.
We support research into causes and treatment of Lymphangiomatosis and related conditions by providing grants to medical research bodies.

Awards
Funds are available for research.  We accept applications from around the world.

Contact
Tracy Milne
49 Crown Crescent
Peterculter
Aberdeen
AB14 0SQ

Tel: 01224 735038
Emailtracy@alfiemilne.org.uk
Websitewww.alfiemilne.org.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.

Awards Available
Seal of Approval, Consumer Cars Award
"Free From" Allergy UK Endorsement

Contact
Allergy UK
Planwell House
35 Edginton Way
Sidcup, Kent
DA14 5BH
Charity Reg. N 1003726
Tel: 01322 619 898
Fax: 01322 663 480
Helpline: 01322619 898
Email: info@allergyuk.org
Web: www.allergyuk.org

Aims
To provide support for Alopecia sufferers throughout Scotland by, for example, maintaining a website, distributing the charity’s newsletter and arranging open meetings.
To communicate with the Scottish Government, health service providers and the media on behalf of Alopecia sufferers and to provide advocacy for individual sufferers where appropriate. (We have successfully campaigned on the provision of wigs for people with alopecia in Scotland).
To seek to raise funds to support Alopecia research.

Awards available : None

Contact
Rosemary Gierthy, Chair
9 Bangholm Bower Avenue
Edinburgh
EH5 3NS
Website: www.alopeciascotland.co.uk

Registered Office: 33 Burnbank Road, Grangemouth FK3 8RU

Aims
To provide information, support and advice for people with experience of alopecia areata, alopecia totalis and alopecia universalis.
To raise public awareness and understanding of alopecia throughout the UK.
Supporting and funding research into alopecia.

Awards Available: None

Contact
Alopecia UK
P O Box 341
Baildon
Shipley
BD18 9EH
E-mail: info@alopeciaonline.org.uk
Website: www.alopecia.org.uk

Anaphylaxis Campaign           

Aims
Anaphylaxis Campaign is the only UK-wide charity solely supporting people at risk from severe allergic reactions (anaphylaxis).  For over 20 years we have provided information and support of the highest quality to patients and their families.

We work with healthcare professionals, the food industry and pharmaceutical companies to deliver better understanding of allergies and anaphylaxis.
We empower patients, carers and healthcare professionals through our AllergyWise online training.We actively campaign for better allergy care and treatments.

Contact
Email:  info@anaphylaxis.org.uk
Helpline: 01252 542029 (Mon-Fri 9am – 5pm)
Address:  1 Alexandra Road, Farnborough GU14 6BU
Website: www.anaphylaxis.org.uk

Follow us on twitter @anaphylaxiscoms and find us on Facebook, LinkedIn and YouTube.

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.

Awards Available
The society gives charitable aid to sufferers on a 'as needed' basis, such donations being non-recurrent in nature. From time to time, grants are made to research projects, usually when the work is specific to Behcet's Syndrome. Assistance is given to epidemiological research through use of the membership address list.

Contact
Behcet's Syndrome Society
8 Abbey Gardens
Evesham
Worcester
WR11 4SP
Tel: (0845) 130 7328 ( Office)
Helpline: (0845) 130 7329 (Local rate)
Email: info@behcetsdisease.org.uk
Web: www.behcets.org.uk

Aims
The Birt-Hogg-Dubé (BHD) Foundation aims to advance and promote research into medical and molecular genetics in order to better understand, diagnose, prevent, cure and relieve BHD syndrome and freely disseminate the results of such research to the public, as well as to advance education of the public in medical and molecular genetics.

Awards Available
The BHD Foundation awards two types of grants in pursuit of our aims:

Research Grants
The BHD Foundation encourages applications from innovative laboratories worldwide. Applications are accepted at any time. There is only one form for all applicants, whether primary investigator, early-career research or doctoral student. Detailed guidelines are provided on the first page of the application.

Travel Grants
Travel grants support researchers attending a conference or engaging in international collaborative research. Applications are accepted at any time. Detailed guidelines are provided on the first page of the application.

Contact
The BHD Foundation,
26 Cadogan Square
London
SW1 0JP
Tel: 020 7193 8921
Email: contact@bhdsyndrome.org
Web: www.BHDSyndrome.org

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.

Awards Available None

Contact
The British Association of Skin Camouflage
PO Box 3671, Chester
Cheshire, CH1 9QH
Tel: (01254) 703 107
Email: info@skin-camouflage.net
Web: www.skin-camouflage.net

Contact
British Porphyria Association
Regsitered Charity No-1089609
136 Devonshire Road
Durham City
DH1 2BL
Helpline: 0300 30 200 30
Email: helpline@porphyria.org.uk
Web: www.porphyria.org.uk

Contact
Mrs E Evendon
17 Barley Mount
Redhills
Exeter
EX4 1RP
Tel: (01392) 431 362

Aims 
Support the CMN sufferers and their families.
Raise awareness of the condition.
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.
'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.

Awards Available None

Contact
Jodi Whitehouse
Caring Matters Now
PO Box 732
Cambridge
CB1 QF
Tel: 07786458883
Web: www.caringmattersnow.co.uk
Email: info@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.
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".

Awards Available None

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

This site includes fact sheets for the newly diagnosed; opportunities for patients to find support and educational forums; Cutaneous Lymphoma Foundation publications; an extensive description of treatment options; diagnosis and treatment centres and clinical trial listings.
www.clfoundation.org

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.

Awards Available None

Contact
Mrs J Davies
Darier's Disease Support Group
29 St Annes Road
Hakin
Milford Haven
Pembrokeshire
SA73 3LQ
Tel: (01646) 695055

About us
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.

Awards Available
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 research grants are awarded on the basis of peer review, twice yearly for work which is relevant to Epidermolysis Bullosa (EB). These are mainly project grants of up to 3 years but a research fellowship in the department of dermatopathology at St John's Institute of Dermatology is also awarded. In some projects a PhD studentship has been created where the need was not for a post doctoral worker. A limited number of programme grants are awarded.

We are particularly interested in work on, (1) genetic aspects of EB, which might eventually have therapeutic implications, (2) cancers in EB, (3) wound healing in EB. Some clinical research is also funded. Closing dates for applications are the 1st April and 1st October each year. Application forms available from the DEBRA office, or can be downloaded from www.debra-international.org

DEBRA funds 3 specialist nurses for children with based at Great Ormond Street Hospital and two specialist children's nurses based in Scotland. In addition, 6 specialist nurses for adults with EB are employed and 11 part-time regional EB care managers. 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
Ms Claire Mather
DEBRA
Debra House
13 Wellington Business Park
Dukes Ride, Crowthorne
Berkshire RG45 6LS
Tel: (01344) 771961
Fax: (01344) 762661
Email: debra@debra.org.uk
Web: www.debra.org.uk

About us                                                                                                                                                                                      
The Degos Disease Support Network is an information hub for patients diagnosed with this very rare disease. It offers diagnostic guidelines for medical professionals on the website, with contact details for involved doctors worldwide. There are forums for patients and for doctors.

Because the disease is so rare, it can be unrecognised or misdiagnosed. It is also known as malignant atrophic papulosis or Köhlmeier disease. There is as yet no aetiology; there has been limited success in treating patients with systemic involvement with Eculizumab.

The community is very small, with a database of about 100 individuals, from various countries.
The website is operated by a volunteer patient, with no outside funding. 

Contact
Ms Judith Calder
Email: info@degosdisease.com
Website: degosdisease.com
Twitter: @degosdisease

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.

We have a Medical Advisory Board made up of many professionals such as Dermatologists, Ophthalmologists, Otolaryngologists, Geneticists, ENT specialists, Psychologist, Physiologist and a Dental specialist team.

We promote and assist research into all aspects of ectodermal dysplasia.

Charity No. 1089135

Awards Available None

Contact
Mrs Diana Perry
Ectodermal Dysplasia Society
Unit 1 Maida Vale Business Centre
Lecdkhampton
Cheltenham
Gloucester
GL53 7ER
Tel: (01242) 261332
Fax: (01242) 261332
Email: diana@ectodermaldysplasia.org
Web: www.ectodermaldysplasia.org

Contact
Magali Speight (Project Manager)
273 High Street
Linlithgow
EH49 7EP
Tel (office): (01506) 840 395
Tel (freephone): 0800 622 6018
E-mail: info@eczemaoutreachscotland.org.uk
Web: www.eczemaoutreachscotland.org.uk

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 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.

Awards Available None

Contact
Ms Lara Bloom
Ehlers-Danlos Support Group
P O Box 337
Aldershot
Hampshire GU12 6WZ
Tel: (01252) 690940
Email: info@ehlers-danlos.org
Web: www.ehlers-danlos.org

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.

Awards available None

Contact
Margaret Costello
Gorlin Syndrome Group
11 Blackberry Way
Penwortham
Preston
PR1 9LQ
Tel: 01772 496849
Email: info@gorlingroup.org
Web: www.gorlingroup.org

This is an American site which is good for patients: www.haileyhailey.com


 

Aims
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.

Awards Available :None

Contact
Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC) Family Alliance
c/o VHL Family Alliance
Graham Lovitt
The Sycamores
19 Stoneleigh Drive
Livermead
Torquay
Devon TQ2 6TR
Helpline: 0808-189-0891
E-mail: hlrcc@vhl.org
Website: www.hlrccinfo.org

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.

Awards Available None

Contact
Miss Marian Nicholson
Herpes Viruses Association
41 North Road
London N7 9DP
Tel: (020) 7607 9661 (for professional calls)
Helpline: 0845 123 2305 (for advice and information to public)
Fax: On request
Web: www.herpes.org.uk

Aims
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.

Awards Available:  None
 
Contact
British Association for Hidradenitis Suppurativa
PO Box 550
Chatham
ME4 9AH
E-Mail: enquiries@hstrust.org
Website: www.ba-hs.org.uk

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.

Aims
To put families who have a common situation or difficulty in touch with each other to enable them to gain mutual support and friendship.
To help reduce the sense of isolation families and children with disabilities or special needs often feel.
To liaise with the medical profession to communicate the group’s existence and to share medical information available to us.
To produce an annual Newsletter. Our 2011 Patient Resource Booklet also available.
To organise an Annual or Bi-Annual Family Event.
To encourage participation in Research Projects where appropriate/available to us

Awards – None

Contact
Terri Grant,
99 Great Cambridge Road,
London
N17 7LN
Tel:  07940114943
Email: indy5258@hotmail.com
Web: www.e-fervour.com/hits
Facebook- https://www.facebook.com/groups/314250980055/

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.

Awards Available None

Contact
Website: www.hyperhidrosisuk.org
email: roliver@stdpharm.co.uk

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.

Awards Available None

Contact
P O Box 1242
Yateley
GU47 7FL
Email: isg@ichthyosis.org.uk
Webiste: www.ichthyosis.org.uk

Registered Charity N 1084783

Aims
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.

Awards Available None

Contact
Mr T Vasey
LEPRA Health in Action
28 Middleborough
Colchester
CO1 1TG
Essex
Tel: (01206) 216700
Fax: (01206) 762151
Email: lepra@lepra.org.uk
Web: www.lepra.org.uk

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.

Awards Available None

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

Association for Lichen Sclerosus and Vulval Health

Contact
Ms Fabia Brackenbury

Email: admin@lichensclerosus.orgfabiabrackenbury@gmail.com
Website: www.lichensclerosus.org

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 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.

Awards Available None

Contact
LUPUS UK
St James House
Eastern Road
Romford
Essex
RM1 3NH
Tel: (01708) 731251
Email: headoffice@lupusuk.org.uk
Web: www.lupusuk.org.uk

Contact
Mrs B Finch
St Luke's Crypt
Syndey Street
London
SW3 6NH
Tel: 020 7351 0990
Fax: 020 7349 9809
Web: www.lymphoedema.org

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.

Is there someone you think should be recognised for the care, commitment and determination they have shown? Why not nominate them for a Beacons of Hope award?
See our website for details - www.lymphoma.org.uk

Awards Available None

Contact 
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.lymphomas.org.uk
Email: information@lymphomas.org.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.

Awards Available
We support Marfan projects where possible but do not have vast sums of money available.

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: contactus@marfan-association.org.uk
Web: www.marfan-association.org.uk

Aims
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.
To provide information for families, partners and friends particularly for the young their peers and teachers.
The group also aims to promote general awareness by targeting specific healthcare professionals and providing them with information on Mastocytosis and Mast Cell conditions.

Our aim is to raise funds, both from within the group and by appealing for donations from others to enable us to finance regular support group meetings at which academic and medical professionals would be invited to address the group.

Ultimately we aim to become a registered charity.

Awards Available None

Contact
The UK Mastocytosis Support Group
Group Leader : Mrs Jess Hobart  

E-mail: Jess.hobart@gmail.com
Website: www.ukmasto.co.uk

Contact
Leigh Smith, MBE, TD, RGN
Chair
Melanoma Action & Support Scotland
Skin Cancer Charity

Please send all mail to:

36 Sr  Enoch's Square
Glasgow
G1 4DF

Tel (mob): 0773 823 1260
Email: leigh@masscot.org.uk
Web: www.masscot.org.uk

Registered Charity No SC040286

Aims                                                                                                                                                                                                             
Melanoma UK is a patient support and advocacy group, dedicated to helping skin cancer patients during all stages and fundraising to provide melanoma nurses and research.

If you are a melanoma patient or carer and need help or support, please don’t hesitate to get in touch. We are always here for you and will do our best to help. If you have any concerns about your skin cancer treatment or if you’ve got questions that you haven’t asked during your appointments, let us know and we’ll do what we can.

We have a free phone number 0808 171 2455 – don’t hesitate to call us.

The group was set up in memory of Jon Herron, a young man from Larne in Northern Ireland who sadly passed away in May 2008. Initially the aim was to fund raise and raise awareness of melanoma and started off as Factor 50, becoming Melanoma UK in 2013.

We were founder members of the parliamentary task force which was brought together by Sian James MP in 2010. We work with NICE and are called upon to give evidence during appraisals of melanoma treatments. Our aim is to provide support to as many melanoma patients and families as we possibly can.

Mrs Gillian Nuttall

Melanoma UK
42 Church Road
Shaw
Oldham
OL2 7AU

Tel: 0808 171 2455
Website: www.melanomauk.org.uk
Email: gillian.nuttall@melanomauk.org.uk
Twitter: @MelanomaUK

 

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

Aims
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 (full information from Kath Humphreys, 01925 766 877);
Encouraging and supportingreserach into the causes, effects and treatment of eczema;

Contact
National Eczema Society
Hill House
Highgate Hill
London N19 5NA
Tel: (020) 7281 3553
Fax: (020) 7281 6395
Helpline: 0800 089 1122
Email: helpline@eczema.org
Email: info@eczema.org
Web: www.eczema.org

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: info@nfauk.org
Web: www.nfauk.org

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.

Services Provided
Information on clinical features of NP
Information on treatment of NP
Links to other sources of information
Open message board for exchange of infromation and support

Contact
Ms Rebecca Dittman
Nodular Prurigo International
136 Bedford Street South
Liverpool
L7 7DB
Tel: 0151 709 1432
Email: info@nodular-prurigo.org.uk
Web: www.nodular-prurigo.org.uk

Aims  
The Nottingham Support Group for Carers of Children with Eczema (NSGCCE) is made up of carers of children with eczema and healthcare professionals. The information and support we offer is mainly web and electronic media based, and we offer this support without geographic boundaries.
There are around thirty patient information leaflets freely available on our website, which are also online streamed audio as well as downloadable documents and mp3 format.

NSGCCE has direct links to the senior clinicians and clinical trials teams in Nottingham.
Though unable to give specific advice, we can get very detailed answers to questions raised on the “Ask the Experts” service.

We disseminate information via our Blog, Email Alert Service and RSS Newsfeed as well as the website. Our blog also carries real life stories submitted by ordinary people about what they did to control their eczema.

On our website are links to publications that report on eczema related issues and where possible the site delivers video and audio podcasts made by the team and others if they relate directly to our cause. 

We have a thriving Twitter community hosted at @eczemasupport.
There are comprehensive links on our website, one for professionals and one for lay people.
The site is well visited. (Visits for 118 different nations with an average of 103 visits per day during 2010).

Awards Available
The NSGCCE operates on an entirely voluntary basis and therefore does not have any funds to award. However, we can give PPI feedback for research applications.

Contact
Amanda Roberts
18 Marlborough Road
Nottingham
NG5 4FG
Tel: 0115 926 9996
Email: enquiry@nottinghameczema.org.uk
Website: www.nottinghameczema.org.uk

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 have our own website www.pemphigus.org.uk and are an associate of the International Pemphigus Foundation in America.

Awards Available None

Contact
Ms Penelope Sherwood
Email: Penelope.Sherwood@btinternet.com
Website: www.pemphigus.org.uk

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.

Awards Available None

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

Aims
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.

Awards Available
PAPAA does support research projects, but does not accept unsolicited applications. PAPAA will support projects that are consistent with the aims and objectives of the charity.

Contact
Mr David Chandler/Mrs Julie Chandler
PAPAA
PO Box 111
St Albans
Herts AL2 3JQ
Tel: 01923 672 837
Fax:01923 682 606
Email: info@papaa.org
Web: www.papaa.org

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.

Awards Available
The Association is advised by a Medical and Research body, and each year funds and promotes important research projects into the causes and treatment of psoriasis. Since its foundation in 1968 the Psoriasis Association has given over £2 million in research grants to projects in the UK. Applications are welcomed on all aspects of Psoriasis.

Contact
Helen McAteer
Chief Executive
The Psoriasis Association
Dick Coles House
2 Queensbridge
Northampton
NN4 7BF
Tel: (01604) 251620
Fax: (01604) 251621
Helpline 08456 760076
Email: mail@psoriasis-association.org.uk
Web: www.psoriasis-association.org.uk

The first scottish charity for all patients suffering from psoriasis and psoriatic arthritis.

Contact
Janice Johnson
PSALV
54 Bellevue Road
Edinburgh
EH7 4DE
Tel: (0131) 556 4117
Email: janice.johnson5@btinternet.com
Web: www.psoriasisscotland.org.uk

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 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. To encourage and exchange of ideas and networking betwen those with an interest in the conditions.

A conference is held each Autumn and regional meetings during the year are supported.

Awards Available
Grants applications are invited from UK centres specialising in Raynaud's and Scleroderma.

Contact
Ms Elizabeth Bevins
Chief Executive
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

The association is open for help during office hours: 0900 - 1700 Monday to Friday inclusive.
Request s for information packs can be made via free phone: (0800) 917 2494

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
Mike Richard
CEO
The Scleroderma Society
Bride House
18-20 Bride Street
London
EC4y 8EE
Tel: 0207 7000 1925
Email: info@sclerodermasociety.co.uk
Web: www.sclerodermasociety.co.uk

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 (Donations welcome) for 19 pages.

Awards Available None

Contact
Mr Nigel Scott
Shingles Support Society
41 North Road
London N7 9DP
Tel: (020) 7607 9661 (Office)
Tel: ( Advice) 0845 123 2305
Web: www.shinglessupport.org.

Contact
The Karen Clifford Skin Cancer Charity
P O Box 9629
West Bridgeford
Nottingham
NG2 9GY
Telephone:07834 450 671
General enquiries: alannah.beardsmore@skcin.org
www.skcin.org


Charity Registration No. 1116440

 
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.

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 shared.
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 therby assisting patients who require additional help and so to improve the facilities available to patients.

Contact
SCN
56 Princes Meadow
Gosforth
Newscatle Upon Tyne
Helpline tel: 07851 073 795
Email: enquiries@skincamouflagenetwork.org.uk
Website:http://www.skincamouflagenetwork.org.uk/

Skin Care Cymru is an organisation that represents the interests of people in Wales who suffer from a skin condition. We seek improvements in care for people affected by any skin condition and to educate and inform relevant professional bodies, the public and media about the needs of people affected by such conditions.
We seek to support both those with skin conditions and their carers.

Aims 
Provide an effective voice for those who suffer from skin conditions in Wales.
Raise the profile and public awareness of dermatology.
Bring the concerns and aspirations of skin care patients in Wales to the attention of the Welsh Assembly, health policy makers, government advisory bodies, health professionals and the general public.
Work to remove the stigma associated with skin conditions through education and media campaigns.
Bring together skin care patients, both individually and in existing specialist organisations, to improve
the lives of those with skin conditions.

Contact
Skin Care Cymru
PO Box 612
Swansea
SA1 9GH
Tel: 07917 572 895
Email: info@skincarecymru.org
Web: www.skincarecymru.org
Registered Charity No. 1131832

Contact
c/o LTCAS
Venlaw Building
349 Bath Street
Glasgow
G2 4AA
Tel: 07852299206
Email: info@skinconditionscampaignscotland.org
Website: http://skinconditionscampaignscotland.org/

Skin Conditions Campaign Scotland is a Company Limited by Guarantee Registered in Scotland
No. SC290012 and Scottish Charity No. SC036783.

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.

Aims
To provide support and information on differents aspects of the syndrome and to raise both public and professional awareness of the condition.
To promote medical research into the causes and treatment of this syndrome.
A family weekend is organised every eighteen months when doctors and other professionals talk about topics relating to the syndrome.
A newsletter is produced twice a year and information leaflets are available.

Contact
Mrs. Jenny Denham,
Burleigh,
348 Pinhoe Road,
Exeter,
Devon, EX4 8AF
Telephone :- 01392 464675
Fax :- 01392 464675
E mail :-support@sturgeweber.org.uk
Web :- www.sturgeweber.org.uk

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

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.

Much has changed since the early days of HIV and as the shape of the epidemic has changed, so has the Trust. Our existing services have been developed and we have introduced new services to meet changing needs. THT has merged with local community-based HIV charities to create a national organisation with the stability and infrastructure capable of ensuring a long-term response to the HIV and sexual health needs.

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.

Awards Available
The Terrence Higgins Trust gives grants only to individuals facing hardships because of symptomatic HIV or AIDS. The Trust does not give grants to organisations.

Contact
Terrence Higgins Trust
314-320 Gray's Inn Road
London WC1X 8DP
Tel: (020) 7812 1600
Direct Line: (0845) 122 1200 (Mon - Fri, 11 - 8)
Helpline: (020) 7242 1010 (12 noon - 10 pm daily)
Fax: (020) 7812 1601
Email: info@tht.org.uk
Web: www.tht.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 by raising funds to support research into the causes and management of Tuberous Sclerosis Complex.
We provide literature, advice, support from TSC Specialist Advisers, events and financial support.

Contact
Mr Chris Johnson
Support Services Coordinator
PO Box 8001
Derby
DE1 0YA
Tel/fax: 01332 290734
Email: development-support@tuberous-sclerosis.org
Web: www.tuberous-sclerosis.org

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.

Aims
To build a strong network of support and to facilitate informal meetings to give that all important personal contact with others living with LP.
To share ideas, knowledge and experience on a support forum via the website.
To provide up to date information and literature.
To offer informal meetings with professional guest speakers.
To raise awareness of Lichen Planus and to actively promote the work of the group, by attending appropriate conferences and workshops.
To network with, and support other relevant organisations.

UKLP is an honorary member of the BSSVD.

Awards Available
None

Contact
Web: www.uklp.org.uk
Email: admin@uklp.org.uk

Founder member; Mrs Bridie Nelson

Aims  
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.
To gather and distribute information about vitiligo.

Awards Available
The Society has a small but growing Research Fund, and an appointed Medical Advisory Panel of scientists, dermatologists and other clinicians. The Panel reviews all applications for the funding of research into vitiligo and makes recommendations to the Trustees of the Society, who award grants as they think appropriate.

Contact 
The Vitiligo Society
24 Greencoat Place
London SW1D 1RD
Tel: (020) 7840 0855
Freephone: (0800) 018 2631
Fax: (020) 7840 0866
Web: www.vitiligosociety.org.uk

Aims
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.

Aims
To provide accurate, up-to-date, non-biased information to women with a wide range of vulval conditions, particularly vulval pain syndromes, and their partners, including details of terminology, diagnosis and treatments;
To report on conventional and complementary therapies.
To provide information on new research and information reported in medical and scientific journals and the general media;
To improve information and education on vulval pain for health professionals.
To provide women with the opportunity to share information and report their own experiences, by holding quarterly workshops around the UK that offer an informal environment for women to meet and discuss issues and treatments with other women and health professionals, and facilitating support groups such as the London, Birmingham and Bristol Vulval Pain Support Groups which also campaign for greater awareness of vulval pain within the general public, the media and the medical profession.

Awards Available
None

Contact:
VPS
P O Box 7804
Nottingham
NG3 5ZQ
Tel: 07765 947 599 ( telephone helpline for the Vulval Health Awareness Campaign)
Web: www.vulvalpainsociety.org

Aims
Wessex Cancer Trust offers a counselling service to those living in the Wessex area. It 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. 

Contact
Wessex Cancer Trust
Suite 9a Fairways House
Mount Pleasant Road
Southampton
SO14 0QB

Tel: (01722) 415071
Fax: (01722) 415071
Web: www.wessexcancer.org
Email: wct@wessexcancer.org.uk


 

Contact
Ms Sandra Webb
XP Support Group
Instron House
Coronation Road
High Wycombe
Bucks
HP12 3SY
Tel: 01494 456192 or 01494 459888
Email: info@xpsupportgroup.org.uk
Web: www.xpsupportgroup.org.uk

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