The following is an alphabetical list of local, national and international 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 Groups Poster
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
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
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
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
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
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
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 TD RGN
17 Cairnhill Road
Bearsden
Dunbartonshire
G61 1AU
Tel: (0141) 942 4068
Web: www.icarus-support.co.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
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
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: 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: bellevue@rapidial.co.uk
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
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
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
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 is the umbrella body providing a collective voice for all skin conditions. Together, the SCC and its member organisations work to improve the quality of life for more than 15 million people in the UK with skin conditions. Membership is open to all organisations that work with people who have any skin condition. The SCC enjoys the support of MPs, health and academic professionals concerned with dermatology, companies and other organisations with a common interest in skin health. The aims of the SCC are to:
- Campaign for the improvement of healthcare for people with skin conditions through work within government, the DoH, NHS, SHAs and PCTs
- Ensure patient and public involvement in all service developments at national and local level
- To campaign for a Gold Standard in all of dermatology that provides accreditable standards for every part of the patient pathway and provides an outline of what every patient should expect from the NHS and what to do if they do not receive this
- Educates and informs the public, healthcare staff and the government about skin conditions and their treatment
- Develop effective media campaigns to raise awareness of skin conditions and dermatological issues, to educate and inform about the affects of skin conditions, their prevention and treatment, and to undermine the stigma associated with skin disease
- Work alongside other influential organisations in order to achieve these objectives
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