The following is an alphabetical list of national, regional and local patient support groups for people with skin disease. They are often run by volunteers who have the disease themselves, and many people 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.  

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 73503 Email: tracy@alfiemilne.org.uk Website: www.alfiemilne.org.uk

Aims Allergy UK are the leading national patient charity for people living with all types of allergy. We work with government, professional bodies, Healthcare Professionals and corporates towards our vision and to help improve the lives of the millions of people with allergic disease. It is estimated that 21 million people in the UK live with allergic disease. But there remains a huge gap in healthcare services for those affected by this disease of the immune system. Our mission is to raise the profile of allergy at all levels, with a vision for everyone affected by allergy to receive the best possible care and support. Our dedicated free Helpline is there for people who need our help and support. Our free Factsheets provide information that is often badly needed to explain the symptoms and triggers that people with allergy are dealing with every day of their lives. 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 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 PO Box 341 Baildon Shipley BD18 9EH E-mail: info@alopeciaonline.org.uk Website: www.alopecia.org.uk Helpline: 0800 101 7025

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 Kemp House 152-160 City Road London EC1V 2NX Tel: 03451307329 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

Aims The Birthmark Support Group provides support and information to anyone who has a birthmark, and to support not only the person with the birthmark, but the whole family. We are aiming to ensure a better understanding amongst the medical profession about types of birthmarks, possible complications and treatment, not only of the birthmark but of the whole person. We aid research into the cause of birthmarks and possible cures. We also aim to raise general awareness and acceptance of birthmarks and assist with children easing the path through schools by educating both teachers and pupils. Contact The Birthmark Support Group London WC1N 3XX E: info@birthmarksupportgroup.org.uk T: 07825 855888

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

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 CEO Bryerton House Linlithgow West Lothian EH49 7EY Tel (office): (01506) 840 395 Tel (freephone): 0800 622 6018 E-mail: info@eos.org.uk Web: www.eos.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 Gorlin Syndrome Group 11 Blackberry Way Penwortham Preston PR1 9LQ Tel: 01772 962026 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 Email: hlrcc@vhl.org.uk Web: 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

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: 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 hare ideas, experiences and give emotional support. Awards Available None Contact PO 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.org; fabiabrackenbury@gmail.com Web: 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 – Awards Available None Contact Helpline: (0808) 808 5555 and press Option 1 Mon – Fri 9 am – 5 pm Web: www.lymphoma-action.org.uk Email: information@lymphoma-action.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 Web: www.ukmasto.co.uk

Contact Leigh Smith, MBE, TD, RGN Chair Melanoma Action & Support Scotland Skin Cancer Charity Please send all mail to: MASScot 208 Clyde Street Glasgow G1 4JY Tel: 01412219878 Tel (mob): 0773 823 1260 Email: leigh@masscot.org.uk Web: www.masscot.org.uk Scottish Charity Incorporated Organization Registration Number SCIO 040286

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 Web: 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 care 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 supporting reserach 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 information 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 Experts͟ 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 Web: 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 Web: 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 Email: elspeth@pxe.org.uk 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

Contact Scleroderma & Raynaud’s UK Head Office1 8-20 Bride Lane London EC4Y 8EE Helpline: 0800 31102756 Email: info@sruk.co.uk Web: https://www.sruk.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.

Skcin is the only UK charity solely dedicated to the raising the awareness of skin cancer, promoting early detection and diagnosis, and sun safety. As this is our sole aim we are focussed on creating impact and tackling head on the rising cases of skin cancer statistics. The charity was born out of the loss of loved one to melanoma and we are committed to making a difference. 85% of skin cancers are due to overexposure to UV and therefore largely preventable. In line with our prevention is better than cure strap-line, our aim is to educate on sun safety and promote early detection and diagnosis.

We achieve our work via a suite of educational intervention programmes working with at risk and targeted groups to help spread the message of our work nationwide.

www.sunsafeschools.co.uk

www.sunsafenurseries.co.uk

www.sunsafeworkplaces.co.uk

www.masced.uk

www.pro.masced.uk

SUN SAFE SCHOOLS

A FREE National Accreditation Programme, assisting primary schools in their duty of care and educating children on the importance of sun safety, to influence behaviours and prevent skin cancer. Assisting schools in implementing policy and sun safe teachings, with a robust and well established programme with consistent learning via annual renewable and measurable scheme. Our aim is to evoke cultural change and plant the seeds of sun safety at a young age and provide children with basic life skills regarding sun safety in effort to impact future behaviours.

SUN SAFE NURSERIES

The sister scheme of Sun Safe Schools that has been specifically developed by Skcin to introduce key sun safety messaging through song, book and basic activities that will help prepare pre-school children in understanding the importance of sun safety. The FREE scheme has proved hugely popular with very positive feedback from pre-school settings who believe that even children of pre-school age are grasping and understanding the ideas presented. Sun Safe Nurseries is a national, annual, accreditation scheme developed by Skcin to introduce sun safe messaging to pre-school children, whilst assisting pre-school settings in implementing a suitable sun safe policy and promoting the reinforcement of sun safety at home. Sun Safe Nurseries is a FREE on-line tool available to all nurseries, playgroups and pre-school settings, giving them access to a range of fun and engaging, resources to help them achieve their goal.

Contact Skcin P O Box 9629 West Bridgeford Nottingham NG2 9GY Telephone:07834 450 671 General enquiries: marie.tudor@skcin.org www.skcin.org Charity Registration No. 1116440

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

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 EX4 8AF Telephone: 01392 464675 Fax: 01392 464675 Email: 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

Vitiligo Support UK is a patient support group, registered as a charity in England and Wales. We have two main objectives, which are:

    • to promote and protect the physical and mental health of sufferers of vitiligo in England and Wales by the provision of support, education and practical advice and
    • to advance the education of the public in all areas relating to vitiligo

We provide information and support primarily through our closed Facebook group, which allows people with vitiligo, and their parents or their friends to ask questions and to share experiences. We are also active on Twitter @VitiligoUK and on Instagram @VitiligoSupportUK We have worked on a number of projects with the BAD including contributing as a patient to writing the Guidelines for Treatment of Vitiligo, and to the Phototherapy Guidelines 2015. W: www.vitiligosupport.org.uk T: @VitiligoUK I: @VitiligoSupportUK    

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