| >> UK National Patient Support Groups
The following is an alphabetical list of patient support groups for those suffering from skin disease. They are often run by volunteers who suffer from the disease themselves, and many patients find it enormously valuable to have such contact with others both for support and for practical help. They also often support research efforts. If no support group exists for the disease in which you are involved, perhaps it may be worth considering starting up such a group.
Click here to download the Patient Support Group Poster
Allergy UK Alopecia Awareness Alopecia UK Behcet's Syndrome Society British Association of Skin Camouflage British Porphyria Association British Red Cross Bullous Pemphigoid Cancerbackup Caring Matters Now (CMN) The Congenital Melanocytic Naevus Support Group Changing Faces Dariers Disease Support Group Dystrophic Epidermolysis Bullosa Research Association (DEBRA) Ectodermal Dysplasia Society Ehlers-Danlos Support Group Gorlin Syndrome Group Hairline International Herpes Viruses Association Hyperhidrosis Support Group Ichthyosis Support Group Latex Allergy Support Group LEPRA - The British Leprosy Relief Association Let's Face It LUPUS UK Lymphoedema Support Network Lymphoma Association (LA) Marfan Association UK Myositis Support Group National Eczema Society National Lichen Sclerosus Support Group Neurofibromatosis Association Pemphigus Vulgaris Network Primary Immunodeficiency Association (PIA) Pseudoxanthoma Elasticum (PXE) Support Group Psoriasis Association The Psoriasis and psoriatic arthritis Alliance (PAPAA) Raynaud's & Scleroderma Association Trust Scleroderma Society Shingles Support Group Skin Camouflage Network Telangiectasia Self Help Group Terrence Higgins Trust Tuberous Sclerosis Association Vitiligo Society Vulval Pain Society Wessex Cancer Trust Marc's Line (Melanoma and Related Cancers of the Skin) XP Support Group
Other Groups
All Party Parliamentary Group on Skin Skin Care Campaign
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 Peter Simmons, Information Manager 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 162 Manor View Par Cornwall PL24 2EN
Tel: 0783 4958578 (Wendy Woodrow) 01726 814371 (Leanne Flavell) E-mail: wendy@alopecia-awareness.org.uk leanne@alopecia-awareness.org.uk 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.alopeciaonline.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 Jan Mather Behcet's Syndrome Society 43 Parkgate Crescent Hadley Wood Barnet Hertfordshire EN4 0NW
Tel: (0845) 130 7328 Helpline: (0845) 130 7329 (Local rate) Email: info@behcets-society.fsnet.co.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 202 Macclesfield SK11 6FP
Tel: (01625) 871 129 Email: basc9@hotmail.com or 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
Aims The British Red Cross Skin Camouflage Service rebuilds confidence by teaching the application of prescribable cover creams to provide effective, long-lasting and waterproof cover for disfiguring skin conditions such as scarring, rosacea, vitiligo, leg veins and many other dermatological conditions. The service is available to men, women and children medical referral from a consultant, GP or dermatology nurse specialist.
The service is available nationally and is provided free of charge although the Red Cross is grateful for donations. Information on clinics can be obtained from the local Red Cross office or see contact below.
Awards Available None
Contact Ms Sheila Hannay Community Services British Red Cross 44 Moorfields London EC2Y 9AL
Tel: (0141) 981 4000 Email: shannay@redcross.org.uk Web: www.redcross.org.uk
Bullous Pemphigoid
Contact
Mrs E Evendon 17 Barley Mount Redhills Exeter EX4 1RP
Tel: (01392) 431 362
Cancerbackup
Aims Cancerbackup aims to help people live with cancer by providing up-to-date information and support. We publish more than 100 factsheets and 70 booklets.
All Cancerbacup's services are confidential and free to people with cancer, their relatives and friends: - cancer nurses respond to enquiries by letter and telephone freeline 0808 800 1234, (Mon-Fri, 9 am-8pm. Not including Bank Holidays) - a wide range of booklets on cancer - an interactive website (see below)
Awards Available None
Contact Joanne Rule Cancerbackup 3 Bath Place Rivington Street London EC2A 3JR
Tel: (020) 7696 9003 Fax: (020) 7696 9002 Email: info@cancerbackup.org Web: www.cancerbackup.org.uk
Caring Matters Now (CMN) The Congenital Melanocytic Naevus Support Group
Aims 1. Support the CMN sufferers and their families 2. Raise awareness of the condition 3. To help fund CMN research carried out in London
Congenital Melanocytic Naevus consists of a huge, brown, hairy mark that covers a part of the body, this is present at birth. The sufferers, mostly children, can also develop smaller marks throughout life.
'Caring Matters Now' is for anyone who suffers from CMN whether it's children or adults. This service is available nationally and is provided free of charge.
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 24 Hour Line: (07970) 498787
Changing Faces
Aims Changing Faces is a National organisation which seeks a better future for children and adults who have disfigurements. Changing Faces supports and represents people with disfigurements by:
- Helping to build their self-esteem and self-confidence
- Ensuring effective support and rehabilitation
- Ensuring equal opportunities and fair treatment
Objectives
- To provide direct help for children, young people and adults who have disfigurements
- To promote health and social care which address the psychological and social effect of disfigurement
- To public awareness and equal opportunities
The charity also publishes a range of self help booklets and videos and works with the Centre for Appearance and Disfigurement (based at the University of the West of England in Bristol) on research projects. Changing Faces now has a new booklet available "Managing the Social Effects of Medical Skin Conditions".
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
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 Mrs Libby Godden Administrator 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 Email: margaret.costello@gorlingroup.org
Tel: 01772 517624 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
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: (020) 7609 9061 (for advice and information to public) Fax: On request Web: www.herpes.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
Contact
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
Contact
Ms Aleks Kinay The Latex Allergy Support Group P O Box 27 Filey YO14 9YH
Helpline: 07071 225 838 (7pm - 10pm Monday - Friday) Web: www.lasg.co.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 provides a quarterly newsletter to it's 8000 members.
Awards Available None
Contact LUPUS UK St James House Eastern Road Romford Essex RM1 3NH
Tel: (01708) 731251 Fax: (01708) 731252 Web: www.lupusuk.org.uk
West Midlands Lupus Group 8 Legge Lane Coseley West Midlands WV14 8RQ
Tel/Fax: 01902 498236 Web: www.westmidlandslupus.co.uk
Lymphoedema Support Network
Contact
Mrs B Finch St Luke's Crypt Syndey Street London SW3 6NH
Tel: 020 7351 4480 Fax: 020 7349 9809 Web: www.lymphoedema.org/lsn
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.lymphoma.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
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 (details from Colette Hoare);
- managing programmes of patient-focused training courses for GPs, nurses and pharmacists (full information from Sue Ward);
- 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 ext 206 Fax: (020) 7281 6395 Helpline: (0870) 241 3604 (Mon-Fri 1-4pm) Email: helpline@eczema.org Email: eczemapro@eczema.org Web: www.eczema.org
National Lichen Sclerosus Support Group
Contact NLSSG P O Box 5830 Lyme Regis Dorset DT7 3ZU
Helpline: 07765 947 599 ( from 10-12am only) 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: nfa@zetnet.co.uk Web: www.nfa.uk.org
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 C 26 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 Gladys Edwards 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: 0870 7703212 Fax:0870 7703213 Email: info@papaa.org Web: www.papaa.org
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.herpes.org.uk/shingles
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.
Awards Available None
Objectives
1.To establish a body to which all skin camouflage practitioners could belong, and through which knowledge and expertise could be networked and shared
2.To develop a directory of professional, qualified camouflage therapist
3. To raise awareness amongst the medical profession, pharmacists and patients as to the availabilty of skin camouflage
4. To raise and maintain professional standards through improved educational facilities, study days and seminars.
5. To provide a professional news journal, enabling members to keep abreast of current issues.
6. To form links with all support groups therby assisting patients who require additional help.
7.... and so to improve the facilities available to patients
Contact SCN PO Box 276 Newcastle Upon Tyne NE3 4XR Helpline tel: 07799 738599 (After 6pm) Email: enquires@skincamouflagenetwork.org.uk Web: www.skincamouflagenetwork.co.uk
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
Ms Diane Sansom Head of Administration Tuberous Sclerosis Association PO Box 12979 Barnt Green Birmingham B45 5AN
Tel: 05602 420809 Tel/Fax: 0121 445 6970 Email: development-support@tuberous-sclerosis.org / diane.sanson@tuberous-sclerosis.org Web: www.tuberous-sclerosis.org
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: Web: www.vulvalpainsociety.org/london
London based Support Group: Email: londonvps@yahoo.co.uk Tel: 07837 533 992 (Please do not leave a message - try again later)
Birmingham based Support Group: Birmingham.VPSG@gmail.com
Bristol Support Group: Tel: 07747 417 670
Wessex Cancer Trust - SCIN (Skin Cancer Information Network) MARC'S LINE (Melanoma and Related Cancers of the Skin)
Aims Marc's Line aims to be of value to patients and their families, health professionals. teachers and others involved in education or prevention of skin cancer. It produces leaflets and information sheets on various types of skin cancer and on sun protection strategies. It has a professional nurse network of voluntary nursing contacts offering psycho-social support for patients and their families living with melanoma. Marc's Line is funded by Wessex Cancer Trust, who offer a counselling service to those living in the Wessex area. Marc's Line also have Professional/Public Education Programmes, for more information on these please contact Jane Freak at the details below.
Awards Available None
Contact Jo Allum / Linda Burt Clinical Nurses Specialists in Skin Cancer Prevention Marc's Line Resource Centre Dermatology Treatment Centre Level 2 Salisbury District Hospital Salisbury Wiltshire SP2 8BJ
Tel: (01722) 415071 Fax: (01722) 415071 Web: www.wessexcancer.org
XP Support Group
Contact
Ms Sandra Webb XP Support Group 2 Strawberry Close Prestwood Great Missenden Bucks HP16 0SG
Tel: 01494 890 891 Email: info@xpsupportgroup.org.uk Web: www.spsupportgroup.org.uk
Other Groups
From time to time, other bodies not listed above may make money available for research in dermatology. These are usually advertised in the "news and notices" section of the BJD.
All Party Parliamentary Group on Skin
Aims The All Party Parliamentary Group on Skin (APPGS) was established in 1994. It has a large and active membership including Members of Parliament from all political parties, Members of the House of Lords, health professionals, patient groups and pharmaceutical companies. The Group was set up as a result of a campaign to raise awareness of skin issues in Parliament by the National Eczema Society. The Society, along with other patient organisations and industry, provide support for the Skin Care Campaign, which is an organisation that brings together all the UK national skin patient support groups. The Skin Care Campaign, amongst other bodies (Including the BAD), provides resources and funding to support hte Secretariat of the APPGS.
The APPGS is seeking progress on a number of areas:
- increasing understanding of the nature, extent, causes and problems associated with all kinds of skin disease;
- working to improve delivery of treatment to those with skin conditions;
- working to educate Government as to the ways in which treatment management can be improved and made more efficient;
- examining other socio-economic and environmental factors in skin disease, such as occupational factors.
More money is not necessarily always the answer - often it is a question of identifying problems and using imaginative and thoughtful solutions to solve them. This is what the group seeks to achieve.
The Group holds a small number of exceptionally well-attended meetings each year. These offer MPs and others the opportunity to understand more about different types of skin disease. Fifteen per cent of all GP patient episodes are skin related - it comprises one of the greatest calls on GP time and yet training for GPs in this area is scarce, if existent at all.
Contact APPGS St James' House 13 Kensington Square London W8 5HD
Tel: (020) 7368 3100 Fax: (020) 7368 3101 Email: APPGS@portcullisresearch.com
Skin Care Campaign
Aims The Skin Care Campaign (SCC) is an umbrella organisation representing the interests of all people with skin diseases in the UK. Membership is open to all UK national skin patient organisations. The SCC enjoys the support of health professionals concerned with dermatology, companies and other organisations with a common interest in skin health. It is a subsidiary of the National Eczema Society. The aims of the SCC are:
- To work for the improvement of health care for people suffering from skin disease. To this end, it makes recommendations for improvements in dermatology services to Parliament through the Associate Parliamentary Group on Skin (APGS), and directly to the Department of Health and to other health service providers. Issues addressed are those of common concern to all or most of its member organisations.
- To educate and inform the public and others about skin diseases and their treatment through:
- Media campaigns directed at health professionals and the public, to raise awareness of dermatology within the medical profession, to educate and inform health professionals and the public about skin diseases and their prevention and treatment, and to undermine the stigma associated with skin disease; and
- A programme of Skin Information Days (SIDs) held throughout the United Kingdom. SIDs are open to the public, free of charge. Those administering them ensure that all member organisations have the opportunity to attend and that those that cannot attend are properly represented.
- To support other organisations in order to pursue these objects.
Contact
Andrew Langford Chief Executive Skin Care Campaign
St. James House
13 Kensington Square
London W8 5HD
Tel: 0208 378 1497
Email: alangford@skincarecampaign.org Web: www.skincarecampaign.org
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