Skin Care Campaign - Support Groups

The Skin Care Campaign works to improve the quality of life for more than 15 million people in the UK with skin conditions.


	Support Groups Allergy UK Alopecia Awareness Alopecia UK Behcet's Syndrome Society British Association of Skin Camouflage British Porphyria Association British Red Cross Bullous Pemphigoid Caring Matters Now (CMN) The Congenital Melanocytic Naevus Support Group Changing Faces Cutaneous Lymphoma Foundation (Formerly Mycosis Fungoides Foundation) Dariers Disease Support Group DebRA (epidermolysis bullosa) Ectodermal Dysplasia Society Ehlers-Danlos Support Group Gorlin Syndrome Group Hairline International Hailey-Hailey Disease Society Herpes Viruses Association Hidradenitis Suppurativa Hyperhidrosis Support Group Ichthyosis Support Group Latex Allergy Support Group LEPRA - The British Leprosy Relief Association Let's Face It London Vulval Pain Support Group LUPUS UK Lymphoedema Support Network Lymphoma Association (LA) Marfan Association UK Mastocytosis Support Group Melanoma Action & Support Scotland(MASScot) Myositis Support Group National Eczema Society National Lichen Sclerosus Support Group Neurofibromatosis Association Nodular Prurigo UK Pachyonychia Congenita Pemphigus Vulgaris Network Primary Immunodeficiency Association (PIA) Pseudoxanthoma Elasticum (PXE) Support Group Psoriasis Association The Psoriasis and psoriatic arthritis Alliance (PAPAA) Psoriasis Scotland Arthritis Link Volunteers (PSALV) Raynaud's & Scleroderma Association Trust Scleroderma Society Shingles Support Society Skin Camouflage Network Skin Care Cymru Skin Care Campaign Scotland Telangiectasia Self Help Group Terrence Higgins Trust Tuberous Sclerosis Association UK Lichen Planus Vitiligo Society Vulval Pain Society Wessex Cancer Trust Marc's Line (Melanoma and Related Cancers of the Skin) XP Support Group Allergy UK Aims Allergy UK is a national medical charity established in 1991 to increase understanding and awareness of allergy, to help people manage their allergies, to raise funds for allergy research and to provide training in allergy for healthcare professionals. The range of services provided include Factsheets and advice from a Health Advisory Panel for members. Seal of Approval - allergy friendly products. Translation cards for people going abroad. Support Contacts. A helpline which operates between 9am and 9pm Weekdays and 10am - 1pm Weekends. Diploma courses and a Postgraduate Certificate for healthcare professionals. Awards Available Seal of Approval, Consumer Cars Award "Free From" Allergy UK Endorsement Contact Allergy UK 3 White Oak Square London Road Swanley, Kent BR8 7AG Charity Reg. N 1003726 Tel: 01322 619 898 Fax: 01322 663 480 Helpline: 01322619 864 Email: info@allergyuk.org Web: www.allergyuk.org Alopecia Awareness Aims Alopecia Awareness is a non profit making organization that aims to provide support and guidance for the sufferer regardless of age or gender including friends and family, we achieve this through the websiteas well as support groups and information literature. We hope to establish further groups throughout the UK and be the backbone of support for alopecia and promote positive wellbeing. Awards Available None Contact Alopecia Awareness 90 Plymouth Road Plympton Plymouth PL7 4NB Tel: 07890 246 398 Website: www.alopecia-awareness.org.uk Alopecia UK 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 5 Titchwell Road London SW18 3LW Tel: 0208 333 1661 E-mail: info@alopeciaonline.org.uk Website: www.alopecia.org.uk Behcet's Syndrome Society Aims The society, a registered Charity run by unpaid volunteers, exists to provide contact and support to sufferers from Behcet's Syndrome. Through its three help lines, leaflets and periodic newsletters it provides information and counselling to over 1350 members. Charitable Aid and Research Grants are made from time to time. 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 British Association of Skin Camouflage Aims The British Association of Skin Camouflage is a non-profit making organisation formed to promote the awareness of remedial skin camouflage, and through our members offer this valuable service to as many patients as possible nationwide. We aim to give first class training to interested and dedicated individuals, be they from medical or beauty backgrounds, in order to increase the amount of available practitioners, and improve the standard of service given. Very often patients are referred to camouflage practitioners as a last resort, but the impact that can be made on someone's life through this simple and cost-effective treatment can be a tremendous step in restoring confidence and self-esteem. 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 British Porphyria Association Contact British Porphyria Association 136 Devonshire Road Durham City DH1 2BL Helpline: 01474 369 231 Email: helpline@porphyria.org.uk Web: www.porphyria.org.uk British Red Cross Awards Available None Contact Ms Sheila Hannay Community Services British Red Cross 44 Moorfields London EC2Y 9AL Tel: (0141) 891 4000 Email: shannay@redcross.org.uk Web: www.redcross.org.uk Bullous Pemphigoid Mrs E Evendon 17 Barley Mount Redhills Exeter EX4 1RP Tel: (01392) 431 362 Caring Matters Now (CMN) The Congenital Melanocytic Naevus Support Group Aims 1. Support the CMN sufferers and their families 2. Raise awareness of the condition 3. To help fund CMN research carried out in London Congenital Melanocytic Naevus consists of a huge, brown, hairy mark that covers a part of the body, this is present at birth. The sufferers, mostly children, can also develop smaller marks throughout life. 'Caring Matters Now' is for anyone who suffers from CMN whether it's children or adults. This service is available nationally and is provided free of charge. Awards Available None Contact Jodi Unsworth Caring Matters Now Bridge Chapel Centre Heath Road Liverpool L19 4XR Tel: (0151) 281 9716 Fax: (0151) 281 9717 Web: www.caringmattersnow.co.uk Helpline: 0845 458 1023 Changing Faces Aims Changing Faces is a National organisation which seeks a better future for children and adults who have disfigurements. Changing Faces supports and represents people with disfigurements by: Helping to build their self-esteem and self-confidence Ensuring effective support and rehabilitation Ensuring equal opportunities and fair treatment 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 Cutaneous Lymphoma Foundation (Formerly Mycosis Fungoides Foundation) www.clfoundation.org 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. Darier's Disease Support Group Aims The Darier's Disease Support Group aims to inform, encourage and assist those with Darier's Disease and their family members. A Newsletter is distributed annually. Members can communicate with each other for mutual support and the exchange of ideas. The group is also in contact with a members of the Darier's Group in the Netherlands. Awards Available None Contact Mrs J Davies Darier's Disease Support Group 19 St Annes Road Hakin Milford Haven Pembrokeshire SA73 3LQ Tel: (01646) 695055 Web: www.dariers.co.nr DebRA Aims The aims of DebRA are to fund research into Epidermolysis Bullosa, to promote the welfare of people with the condition and to educate the public and professional audiences about EB. 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 Mr John Dart 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 Ectodermal Dysplasia Society Aims We aim to obtain answers from Medical professionals to members' specific questions support families when they approach organisations such as Local Authorities, Social Services. etc. by putting together a personal report explaining very simply how ED affects them liaise with Head Teachers, Health Authorities and medical professionals help families get the right care for their child in schools, such as full or part time carers, fans, air-conditioning etc. help more families obtain Disability Living Allowance, Disability Carers Allowance etc support members in their fundraising put people in touch with each other if requested find pen pals for the younger members help families obtain information regarding ante-natal testing put the society on the databases of Health Authorities, NHS Trusts, Health Organisations etc. 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 108 Charlton Lane Cheltenham Gloucester GL53 9EA Tel: (01242) 261332 Fax: (01242) 261332 Email: diana@ectodermaldysplasia.org Web: www.ectodermaldysplasia.org Ehlers-Danlos Support Group Aims The Ehlers-Danlos Support Group aims to inform, encourage and assist those with Ehlers-Danlos Syndrome (EDS and their family members. It produces booklets and information sheets on various 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 Gorlin Syndrome Group 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 Hairline International Aims Hairline International - The Alopecia Patients' Society is an international network of patients who have lost, or are losing, their hair through scalp disease or thinning conditions. The society provides information on medical treatment, mutual support and practical help. It is the only national alopecia patients' support group. Awards Available None Contact Ms Elizabeth Steel Hairline International - The Alopecia Patients' Society Lyons Court 1668 High Street Knowle West Midlands B93 0LY Tel: (01564) 785 980 Tel/Fax: (01564) 782270 Web: www.hairlineinternational.co.uk Hailey-Hailey Disease Society www.haileyhailey.com This is an American site which is useful for patients. The Herpes Viruses Association Aims A registered charity, the Herpes Viruses Association provides information to members of the public, press and professionals on facial and genital herpes simplex and on shingles; publishes leaflets, a quarterly journal, arranges workshops, self-help meetings, provides 24 hour helpline service and one-to-one counselling. Send SAE for information about the services provided. 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 British Association for Hidradenitis Suppurativa 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@ba-hs.org.uk Website: www.ba-hs.org.uk Hyperhidrosis Support Group Aims To give advice on line to those suffering from Hyperhidrosis, including basic treatment options available over the counter, specialist advice and where to go for treatment in the UK. Which hospitals specialise in what forms of treatment and what is available on the NHS and privately. We also have some information in paper format and can send this out to all those who request it. To provide up to date information for patients and medical staff on all treatments available in the UK. Awards Available None Contact Mrs Julie Halford Website: www.hyperhidrosisuk.org email: info@hyperhidrosisuk.org Ichthyosis Support Group Aims The Ichthyosis Support Group (ISG) was founded in March 1997 by a group of determined individuals who either suffer from ichthyosis themselves, or who care for children who suffer with it. We have a Medical Advisory Board (MAB) to assist with the production of literature and to answer any medical questions that the group receives. As the group develops, ultimately we hope to raise funds for supporting research into ichthyosis. We issue all our members with a quarterly newsletter consisting of information, including any recent developments, a question and answer section, and personal stories. We also run a pen pal scheme through the newsletter, to encourage ichthyosis sufferers to make contact with others in a similar situation to themselves. We produce an information pack, with literature on various forms of ichthyosis, skin care tips and benefit information. The groups main aims, are to raise awareness of this debilitating skin condition, as well as to create a positive, supportive network of parents, families and health care professionals, in order to share ideas, experiences and give emotional support. Awards Available None Ichthyosis Suuport Group P. O. Box 1404 Bagshot GU22 2LS Tel: 0845 602 9202 Email: isg@ichthyiosis.org.uk Webwww.ichthyosis.org.uk Registered Charity N 1084783 Latex Allergy Support Group Aims As a self-help group, the organisations' focus is the support of members through the sharing of information and personal experiences. The Latex Allergy Support Group has three aims: To raise awareness of latex allergy amongst the general public, and healthcare workers in particular. To provide a national support network for those affected by latex allergy. To push for investigation into the increased incidences of the allergy, the identification of 'at risk' groups and the prevention of unnecessary contact with known sensitising agents. Awards Available None Ms Aleks Kinay The Latex Allergy Support Group P O Box 27 Filey YO14 9YH Helpline: 07071 225 838 (7pm - 10pm Monday - Friday) Email: info@lasg.org.uk Web: www.lasg.org.uk LEPRA Health in Action 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 Let's Face It Aims Let's Face It offers the hand of friendship on a one to one basis, to link families, friends and professionals, to assist people with facial disfigurement to share their experiences, struggles and hopes with other friends who have 'been there', to help them build the courage to face life again. 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 London Vulval Pain Support Group Aims To provide confidential support and advice for women in the London area who suffer from vulval pain due to vulvodynia and vestibulodynia. Some women wiht these problems also suffer from associated conditions such as lichen sclerosus, thrush, interstital cystitis, vulval eczema and vaginismus. Membership benefits include support group meetings every six weeks and an e-mail forum for discussion of latest treatments and other relevant issues. We also campaign for greater awareness of vulval pain wihtin the medical profession, the media and among women in genenral. Contact Tel: 07837 533 992 (Please do not leave a message - try again later) E-mail: londonvps@yahoo.co.uk Web: www.vul-pain.dircon.co.uk/london LUPUS UK Aims LUPUS UK supports people who are diagnosed with Lupus and assists all those moving towards their diagnosis. The charity promotes public awareness regarding the Lupus condition and helps educate the medical profession. It funds research into the cause of the illness and funds a network of Lupus Nurses nationally. The charity has over 30 Regional Groups throughout the UK and provides a quarterly newsletter to over 6000 members. Awards Available None Contact LUPUS UK St James House Eastern Road Romford Essex RM1 3NH Tel: (01708) 731251 Fax: (01708) 731252 Email: headoffice@lupusuk.org.uk Web: www.lupusuk.org.uk Lymphoedema Support Network 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 Lymphoma Association (LA) Aims Provides emotional support and information for lymphoma (Hodgkin's disease and non Hodgkin's lymphoma) patients and their families. Literature and videos available. Quarterly newsletter. National network of helpers with experience of the disease, with whom enquirers may be linked, usually by telephone. Local groups in some areas. 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 Mrs Ros Redding 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 Marfan Association UK Aims We exist to offer support to patients, their families and to the many associated specialists and care workers, providing updated text and fostering Marfan research projects nationally. Our slogan is "support for today with tomorrow in mind", because we feel all three of our aims have equal importance. We have been undertaking a national awareness campaign in schools and hospitals across the country for the past three years, as early diagnosis and appropriate treatment can avoid tragic and unnecessary loss of life due to the cardiological problems caused by Marfan syndrome. 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: marfan@tinyonline.co.uk Web: www.marfan-association.org.uk Melanoma Action and Support Scotland Contact Leigh Smith c/o LTCAS 349 Bath Street Glasgow G2 4AA Tel (mob): 0773 823 1260 Email: leigh@masscot.org.uk Web: www.masscot.org.uk Mastocytosis Support Group 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 Irene Wilson E-mail : winegums@blueyonder.co.uk Website: www.ukmasto.co.uk Myositis Support Group Contact Irene Oakley Dermatomyositis and Polymositis Support Group 146 Newtown Road Woolston Southampton Hampshire SO19 9HR Tel: (023) 8044 9708 Fax: (023) 8039 6402 Email: info@myositis.org.uk Web: www.myositis.org.uk National Eczema Society Aims The National Eczema Society exists to eliminate the effects of eczema. It seeks to achieve this by: providing information, advice and support to people with eczema and those who care for them both locally and nationally; managing programmes of patient-focused training courses for GPs, nurses and pharmacists (full information from Kath Humphreys, 01925 766877); encouraging and supporting research into the causes, effects and treatment of eczema; Provides facilities to the Skin Care Campaign Awards Available When funds allow proposals for Ph.D studentships are invited through advertisements in the BAD Newsletter and National Press, usually Nature or the Guardian 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 National Lichen Sclerosus Support Group Contact NLSSG Fabia Brackenbury Flat 91 Homercourt House Bartholomew Street West Exeter EX4 3AE Helpline: 07765 947 599 Email: admin@lichensclerosus.org Website: www.lichensclerosus.org The Neurofibromatosis Association Aims Founded in 1981, the aims of the Association are: to help not only those with neurofibromatosis but also their families through the employment of a nationwide network of professional Neurofibromatosis Co-ordinators (NCO's). These NCO's are based mainly in Genetics Departments of major hospitals and are able to provide expert advice and support for people with both Nf1 and Nf2; to help improve clinical care for patients with Nf; to encourage the establishment of mutual support groups throughout the country to help counter the feeling of isolation felt by many people affected by Nf; to provide accurate and up to date information not only to the patients themselves but also to medical professionals, healthcare workers, teachers and others concerned in the care of those affected; to fund research. Awards Available Grants are made when funds are available and advertised in the Lancet. The grants are available only for Nf research and subject to peer review. Contact Mrs Roberta Tweedy Chief Executive The Neurofibromatosis Association Quayside House 38 High Street Kingston upon Thames Surrey KT1 1HL Tel: (020) 8439 1234 Fax: (020) 8439 1200 Email: info@nfauk.org Web: www.nfauk.org Nodular Prurigo UK 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 UK 136 Bedford Street South Liverpool L7 7DB Tel: 0151 709 1432 Email: info@nodular-prurigo.org.uk Web: www.nodular-prurigo.org.uk Pachyonychia Congenita www.pachyonychia.org This is an American site which has useful information for patients/healthcare professionals regarding this condition. The Pemphigus Vulgaris Network Aims The Pemphigus Vulgaris Network provides a forum in this country for people living with PV and those personally or professionally concerned with it. We offer people an opportunity to exchange contact details, so there is someone else to talk to when needed, help people find information they may want, and give general support. We can offer support and some information for people with other forms of pemphigus and mucous membrane pemphigoid (not bullous pemphigoid). The Network has no funding and relies entirely on voluntary donations to continue. Correspondents should send an sae. We have our own website www.pemphigus.org.uk and are an associate of the International Pemphigus Foundation in America. Awards Available None Contact Ms Siri Lowe The Pemphigus Vulgaris Network Flat 26 C St Germans Road London SE23 1RJ Tel: (020) 8690 6462 Website: www.pemphigus.org.uk Primary Immunodeficiency Association (PIA) Aims To improve the quality of life of all people with primary immunodeficiencies. In order that we might achieve this we have the following aims: To promote awareness and early diagnosis of the various primary immunodeficiencies To ensure that all those affected have access to the best possible treatment To provide information and support to people with primary immunodeficiencies To encourage and support original research. Awards Available Research Grants Contact Chris Hughan The Primary Immunodeficiency Association Alliance House 12 Caxton Street London SW1H 0QS Tel: (020) 7976 7640 Fax: (020) 7976 7641 Email: info@pia.org.uk Web: www.pia.org.uk The Pseudoxanthoma Elasticum(PXE) Support Group Aims A registered charity, the PXE Support Group (PiXiE) exists to help, encourage and assist those with PXE and their family members; to heighten the awareness of PXE in the Medical Community, Support Services and the General Public; to link members of the Group with each other for mutual support and exchange of ideas and to provide information on the various aspects of PXE. A newsletter is produced at intervals, containing medical articles; news from members and news from PXE Support Groups in the USA and other parts of the world. This is circulated, free of charge, to all members and interested parties. A National Conference is held biennially. 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 The Psoriasis Association Aims The aim of the Psoriasis Association is to help people with psoriasis by providing up to-date information on all aspects of the condition and promoting self-help and mutual support through its members. It is the main source of information on all aspects of psoriasis in the UK. The Association works nationally to raise standards of patient care and improve education about psoriasis with both the public and all the healthcare professions. 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 Psoriasis and Psoriatic Arthritis Alliance 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 Psoriasis Scotland Arthritis Link Volunteers (PSALV) Aims 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 Raynaud's & Scleroderma Association Trust Aims The Raynaud's Association was founded in 1982 and in 1990 changed the name to become the Raynaud's & Scleroderma Association because of the close link between the two conditions. The aims are to promote a greater awareness of Raynaud's, scleroderma and associated conditions; to improve communication between doctors and patients; to put patients in touch with each other in order to exchange ideas and information; to offer advice and support to sufferers and their carers and to raise funds for research and welfare projects. It holds regional meetings at venues nation wide and an annual conference is held in September/October. A helpline is available for information and advice. Awards Available Grants are given to specialist centres relating to Raynaud's and Scleroderma. Contact Mrs Anne Mawdsley MBE 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 Opening hours: 0900 - 1700 Monday to Friday inclusive. Outside these hours an answering machine is in operation Free phone: (0800) 917 2494 The Scleroderma Society Aims The Scleroderma Society was founded in 1982 to help patients who suffer from the disease and their Families. The Society is based in London with Regional Groups in areas where there is sufficient interest and membership to support one. Meetings are held to exchange ideas and experiences and a quarterly newsletter with specialist articles, regional news and contributions from members is distributed. Awards Available The Society funds medical research into Scleroderma. Contact Kim Fligelstone Chair The Scleroderma Society P O Box 581 Chichester PO19 9EW Tel: 0800 311 2756 Email: info@sclerodermasociety.co.uk Web: www.sclerodermasociety.co.uk Shingles Support Society Aims A sub group of the Herpes Viruses Association, the Shingles Support Society supplies information on shingles and post-herpetic neuralgia, including self-help advice for patients and fully referenced drug treatment information for GPs, written by a consultant neurologist. Send SAE (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. Skin Camouflage Network Aims In 1994, a number of therapists, working within the NHS, shared the view that to raise standards of patient care and increase awareness of the facilities for skin camoufalge amongst members of the medical profession, they should form an associaition. This became SCN, and today we have members throughout the country. The associaition has succeeded in establishing a directory of professionally qualified members from medical, beauty therapy, Red Cross and academic backgrounds whose services- available both through the NHS and privately - are becoming more familiar and therefore capable of referral, to an ever- increasing number of GP's and Dermatology and Plastic Surgey specialists. SCN membership is open to all practitioners and offers study days, news journals, support and guidance from colleagues. 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 PO Box 276 Newcastle Upon Tyne NE3 4RZ Helpline tel: 07851 073 795 Email: enquires@skincamouflagenetwork.org.uk Web: www.skincamouflagenetwork.co.uk Skin Care Cymru Aims 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. The objectives of Skin Care Cymru are; • 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. Awards Available None 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 Skin Care Campaign Scotland c/o LTCAS Venlaw Building 349 Bath Street Glasgow G2 4AA Telephone: 07852299206 Email: Melissa.sccs@gmail.com Skin Care Campaign Scotland is a Company Limited by Guarantee Registered in Scotland No. SC290012 and Scottish Charity No. SC036783. Telangiectasia Self Help Group Aims In 1985 the Telangiectasia Self-Help Group was founded to maintain a register of sufferers and to put affected families in touch with one another. A newsletter is sent to all members informing them of developments in the treatment of this disease. An information pack is available on request. Please enclose a S.A.E. Awards Available None Contact Mrs D M Lawson Co-ordinator/Organiser Telangiectasia Self-Help Group 39 Sunny Croft Downley High Wycombe HP13 5UQ Tel: (01494) 528047 Fax None Email: info@telangiectasia.co.uk Web: www.telangiectasia.co.uk Terrence Higgins Trust Aims The Terrence Higgins Trust was set up in 1982 as one of the first national voluntary organisations to respond on all aspects of the AIDS and HIV health crisis. 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 Tuberous Sclerosis Association Aims The Tuberous Sclerosis Association aims to provide support for parents and sufferers, sharing problems and giving information; by providing education, publicity and information to promote an understanding and awareness of the problems caused by this condition; to promote fund raising to support research into the causes and management of Tuberous Sclerosis. We also supply a wide range of literature, advice, Benevolent Fund, support from TS Specialist Advisers , 6 specialist TS clinics, medical advisers and family weekend breaks. Awards Available Any application for funds will be considered if in connection with research into the causes or management of the disorder. Contact Mrs Fiona McGlynn Head of Development and Support Services Tuberous Sclerosis Association PO Box 13938 Birmingham B45 5BF Chris Johnson Membership & Support Service Co-ordinator TSA PO Box 8001 Derby DE1 0YA Email: development-support@tuberous-sclerosis.org / chris.johnson@tuberous-sclerosis.org Web: www.tuberous-sclerosis.org UK Lichen Planus 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. Our main objectives are: 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 The Vitiligo Society 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 Jennifer Viles Manager The Vitiligo Society 125 Kennington Road London SE11 6SF Tel: (020) 7840 0855 Freephone: (0800) 018 2631 Fax: (020) 7840 0866 Email: Ken125@vitligosociety.org.uk Web: www.vitiligosociety.org.uk Vulval Pain Society 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. The group 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; and 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 Wessex Cancer Trust - SCIN (Skin Cancer Information Network) MARC'S LINE (Melanoma and Related Cancers of the Skin) Aims Marc's Line aims to be of value to patients and their families, health professionals. teachers and others involved in education or prevention of skin cancer. It produces leaflets and information sheets on various types of skin cancer and on sun protection strategies. It has a professional nurse network of voluntary nursing contacts offering psycho-social support for patients and their families living with melanoma. Marc's Line is funded by Wessex Cancer Trust, who offer a counselling service to those living in the Wessex area. Marc's Line also have Professional/Public Education Programmes, for more information on these please contact Jane Freak at the details below. Awards Available None Contact Jo Allum / Linda Burt Clinical Nurses Specialists in Skin Cancer Prevention Marc's Line Resource Centre Dermatology Treatment Centre Level 3 Salisbury District Hospital Salisbury Wiltshire SP2 8BJ Tel: (01722) 415071 Fax: (01722) 415071 Web: www.wessexcancer.org Email: MARCSline@salisbury.nhs.uk XP Support Group Contact Ms Sandra Webb XP Support Group Instron House Coronation Road High Wycombe Bucks HP12 3SY Tel: 01494 456 192 Email: info@xpsupportgroup.org.uk Web: www.xpsupportgroup.org.uk

	Skin Care Campaign \| all enquires: alangford@skincarecampaign.org