The following is an alphabetical list of national, regional and local patient support groups for people with skin disease. They are often run by volunteers who have the disease themselves, and many people find it enormously valuable to have such contact with others, both for support and for practical help.
Some groups may offer patient information as well as peer support. As with any organisation, it is important to review the source of the information. If you are planning any changes to the management of your condition based on the advice of other patients, it is always good practice to discuss this with a doctor, or other medical professional first.
Please note, these organisations are independent of the BAD. This list has been developed to help patients who are interested in exploring peer support groups. The BAD is not responsible for content produced by third-party organisations, nor by linking to the websites of organisations do we endorse the content of these organisations, whether on their website, forums, or social media channels.
Action for XP
Action for XP provides a comprehensive support network for individuals and families affected by the ultra-rare disease, xeroderma pigmentosum (XP), providing equitable access to our charitable services throughout the UK. Providing both practical and emotional support to aid the improvement to the quality of life for individuals and families affected by XP, through all life stages of living with the disease.
To further conditions for families in underserved regions internationally by engaging in proactive collaboration and knowledge sharing with our peers internationally. To further scientific understanding of xeroderma pigmentosum and work with the international scientific community to progress research and communicate that research to our community. To promote education and awareness both within the XP community and externally within the professional community and general population.
Action for XP
Charity Reg. SC045465
Alfie Milne Lymphangiomatosis Trust
Who we are
The Alfie Milne Lymphangiomatosis Trust was founded in 2011 and became a registered charity in 2012.
Lymphangiomatosis is the name given to a rare congenital disorder of lymphatic channels which affects their size, shape, location and function. If the disorder affects both lymphatic channels and blood vessels, it may be referred to as a lymphovenous malformation.
We work closely with two other organisations the Lymphangiomatosis and Gorham’s Disease Alliance – Europe (LGDA – E) and their sister organisation in the US, the LGDA, helping our worldwide community. We have access to an International Patient Registry and encourage our patients to enrol and share their information.
What we do
Our aims are to promote public awareness of this life limiting and potentially, life threatening, disease as well as to provide a support network for patients, their families and health care professionals. We offer a Facebook group to connect patients around the world.
Our medical advisor assists with the production of literature and helps to answer any medical questions that we receive.
We support research into causes and treatment of Lymphangiomatosis and related conditions by providing grants to medical research bodies.
Funds are available for research. We accept applications from around the world.
49 Crown Crescent
Allergy UK are the leading national patient charity for people living with all types of allergy. We work with government, professional bodies, Healthcare Professionals and corporates towards our vision and to help improve the lives of the millions of people with allergic disease.
It is estimated that 21 million people in the UK live with allergic disease. But there remains a huge gap in healthcare services for those affected by this disease of the immune system. Our mission is to raise the profile of allergy at all levels, with a vision for everyone affected by allergy to receive the best possible care and support.
Our dedicated free Helpline is there for people who need our help and support. Our free Factsheets provide information that is often badly needed to explain the symptoms and triggers that people with allergy are dealing with every day of their lives.
35 Edginton Way
Charity Reg. N 1003726
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.
10-12 Commercial Street
Anaphylaxis Campaign is the only UK-wide charity solely supporting people at risk from severe allergic reactions (anaphylaxis). For over 20 years we have provided information and support of the highest quality to patients and their families.
We work with healthcare professionals, the food industry and pharmaceutical companies to deliver better understanding of allergies and anaphylaxis.
We empower patients, carers and healthcare professionals through our AllergyWise online training. We actively campaign for better allergy care and treatments.
Follow us on twitter @anaphylaxiscoms and find us on Facebook, LinkedIn and YouTube
Behcet's Syndrome Society
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.
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.
Behcet’s Syndrome Society
152-160 City Road
The Birt-Hogg-Dubé (BHD) Foundation aims to advance and promote research into medical and molecular genetics to better understand, diagnose, prevent, cure and relieve BHD syndrome and freely disseminate the results to the public. A fundamental part of the work is to support the BHD community and raise awareness of BHD. The charity provides advice and information, sends out a monthly newsletter, hosts regular patient-focused events and runs a yearly symposia.
The BHD Foundation is managed by the Myrovlytis Trust, a medical research charity dedicated to rare diseases. The Myrovlytis Trust’s mission is to drive research, provide support and improve outcomes for rare disease patients and their families. The Myrovlytis Trust provides grants for research into BHD.
Applications are encouraged from innovative laboratories worldwide. There are funding calls throughout the year for Small/Pilot Studies, PhD Studentships and Project Grants.
Public engagement grants are available for projects involving patients and/or the public to advance knowledge, provide advocacy and raise awareness of rare diseases and new technologies. Applications can be made at any time.
There is also a yearly fully funded science communication training course for PhD students.
Travel grants are available to support attendance at a conference or international collaborative research. Applications can be made at any time.
The Myrovlytis Trust
26 Cadogan Square
Tel: +44 (0)20 8050 2091
Research enquiries: firstname.lastname@example.org
Other enquiries: email@example.com
Twitter: @myrovlytis and @BHD_Foundation
Birthmark Support Group
The Birthmark Support Group provides support and information to anyone who has a birthmark, and to support not only the person with the birthmark, but the whole family.
We are aiming to ensure a better understanding amongst the medical profession about types of birthmarks, possible complications and treatment, not only of the birthmark but of the whole person. We aid research into the cause of birthmarks and possible cures.
We also aim to raise general awareness and acceptance of birthmarks and assist with children easing the path through schools by educating both teachers and pupils.
The Birthmark Support Group
Telephone: 07825 855888
British Porphyria Association
British Skin Foundation
British Skin Foundation
The British Skin Foundation is the only UK charity that raises money to fund research into all types of skin diseases, including skin cancer. Sixty percent of British people currently suffer from or have suffered with a skin disease at some point during their lifetime. Whilst some skin conditions are manageable, others are severe enough to kill.
We are here to help change that by raising money for vital research to help find cures and treatments for common skin conditions like eczema or acne, through to potential killers like malignant melanoma.
Founded in 1996, the British Skin Foundation has supported 400 research projects and awarded £17,000,000 in funding across all skin diseases.
Whilst we are dedicated to raising money for research, we also aim to raise awareness of skin diseases in the wider community. We’re committed to educating people about the different skin conditions, helping to reduce stigma and promote understanding.
British Skin Foundation
4 Fitzroy Square
Mrs E Evendon
17 Barley Mount
Tel: (01392) 431 362
Caring Matters Now (CMN) The Congenital Melanocytic Naevus Support Group
Caring Matters Now supports children and adults living with a rare and potentially life-threatening condition called Congenital Melanocytic Naevus (CMN). CMN presents itself in large dark brown birthmark covering up to 80% of the body. CMN can also grow internally which can result in loss of life.
Caring Matters Now has 3 main aims:
• Support those living with CMN
• Raise awareness of CMN
• Fund research into CMN
Caring Matters Now supports over 600 families living with CMN and has raised over one million pounds for CMN research which has resulted in finding the cause of CMN and we are now working towards a cure. Caring Matters Now aims to raise awareness of CMN to 1) reduce the stigma and negative perceptions attached to living with CMN and 2) educate the medical profession to ensure a correct diagnosis is given at birth and the correct medical care is administered.
Awards Available None
Caring Matters Now
PO Box 184
Caring Matters Now
PO Box 184
Changing Faces is the UK’s leading charity for anyone with a visible difference or disfigurement, a mark, scar or condition on the face or body which affects their mental or emotional wellbeing. We provide life-changing mental health, wellbeing and skin camouflage services. We work to transform understanding and acceptance of visible difference, and campaign to reduce prejudice and discrimination.
All our services are free to the user and our practitioners are all qualified in their field.
We have a range of mental health and wellbeing services for anyone whose visible difference affects their mental or emotional wellbeing. These include online resources for adults, young people and children to help cope with staring or intrusive comments, how to build resilience and relationships. There are range of services including peer support groups, workshops for children and parents, and one to one coaching and counselling sessions.
Skin camouflage uses specialist creams and powders on the face or body to reduce the appearance of a scar, mark or condition. The products can be used on all genders and children over the age of five, with shades for all skin tones.
The creams and powders are available on prescription.
Instagram – @changingfacesuk
X formally Twitter – @FaceEquality
LinkedIn – Changing Faces, UK
Facebook – Changing Faces
Cutaneous Lymphoma Foundation (formerly Mycosis Fungoides Foundation)
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.
Dariers Disease Support Group
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.
Mrs J Davies
Darier’s Disease Support Group
29 St Annes Road
Tel: (01646) 695055
DEBRA (Epidermolysis Bullosa)
DEBRA is the national charity and patient support organisation for people living with or directly affected by epidermolysis bullosa (EB), also known as butterfly skin, an incredibly painful, genetic skin blistering condition. DEBRA does not receive statutory funding and relies on the income generated by its charity shops and fundraising activities to provide care and support for people living with EB, and to fund pioneering research to find effective treatments and ultimately, cure(s) for EB.
DEBRA works in partnership with the NHS to deliver an enhanced EB healthcare service which is vital for people living with EB. There are four designated EB centres of excellence around the UK providing expert specialist EB healthcare and support, as well as other hospital locations and regular clinics which aim to provide EB services to people wherever they are located.
The DEBRA Community Support team works with the EB community, healthcare, and other professionals to improve quality of life for people living with EB. They offer support, advocacy, information, and practical help at every stage of life. The DEBRA Membership scheme includes holiday home respite, grants, and bespoke events to support people living with EB.
Research to find treatments
DEBRA supports research programmes that aim to find treatments that will slow, stop, or reverse the progression of EB. Repurposing drugs which are already available and successful in treating other inflammatory skin conditions is a key part of its research programme.
Ms Claire Mather
13 Wellington Business Park
Dukes Ride, Crowthorne
Degos Disease Support Network
The Degos Disease Support Network is an information hub for patients diagnosed with this very rare disease. It offers diagnostic guidelines for medical professionals on the website, with contact details for involved doctors worldwide. There are forums for patients and for doctors.
Because the disease is so rare, it can be unrecognised or misdiagnosed. It is also known as malignant atrophic papulosis or Köhlmeier disease. There is as yet no aetiology; there has been limited success in treating patients with systemic involvement with Eculizumab.
The community is very small, with a database of about 100 individuals, from various countries.
The website is operated by a volunteer patient, with no outside funding.
Ms Judith Calder
Ectodermal Dysplasia Society
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 c.arers, fans, air-conditioning etc.
- Help more families obtain Disability Living Allowance, Disability Carers Allowance etcSupport 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
Mrs Diana Perry
Ectodermal Dysplasia Society
Unit 1 Maida Vale Business Centre
Eczema Outreach Support
Eczema Outreach Support is a free service for children and young people under 18 with eczema and their families.
The charity offers practical and emotional support to help families manage eczema, meet other families in a similar situations, and to help children better understand their eczema in a fun way. Families can benefit from 1-1 support, a closed Facebook Group, family events, specialist resources for issues such as eczema in school, and tailored support for children and young people.
They also run nursery and school workshops about eczema across the UK.
Suzi Holland, Deputy CEO
Ehlers-Danlos Support UK
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.
Ms Lara Bloom
Ehlers-Danlos Support Group
P O Box 337
Gorlin Syndrome Group
- 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, booklet, newsletter, and an annual patient conference. The group is supported by a number of medical advisors
Gorlin Syndrome Group
43 Tor View
Hailey-Hailey Disease Society
This is an American site which is good for patients: www.haileyhailey.com
Hereditary Leiomyomatosis and Renal Cell Carcinoma (HLRCC) Family Alliance
To provide information, support and advice for people with experience of cutaneous and uterine leiomyomatosis(MCUL) and renal cell cancer. HLRCC, also known as Reed’s Syndrome, is a condition associated with the Fumarate Hydratase gene.
Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC) Family Alliance
c/o VHL UK/ Ireland
47 Tiln Lane
Herpes Viruses Association
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.
Miss Marian Nicholson
Herpes Viruses Association
41 North Road
Tel: (020) 7607 9661 (for professional calls)
Helpline: 0845 123 2305 (for advice and information to public)
Fax: On request
HITS Worldwide Family Support Network
HITS Worldwide Family Support Network (formerly HITS (UK) is a family support network which was specifically set up in 2001 by families to support other families with Hypomelanosis of Ito because no other support group existed anywhere else in the world. Support prior to this was via letter and telephone and has been available to families since 1985. We are now supporting families in 30 countries. We are a not-for-profit voluntary group.
HITS Worldwide aims to support families via our online groups at Yahoo Groups and Facebook, Twitter, Pinterest, e-mail, telephone and by bringing families together at annual events: to try and enrich the lives of families and children affected by Hypomelanosis of Ito by facilitating and encouraging communication and linking families together; and by being a focal point offering verbal and written support.
To put families who have a common situation or difficulty in touch with each other to enable them to gain mutual support and friendship.
To help reduce the sense of isolation families and children with disabilities or special needs often feel.
To liaise with the medical profession to communicate the group’s existence and to share medical information available to us.
To produce an annual Newsletter. Our 2011 Patient Resource Booklet also available.
To organise an Annual or Bi-Annual Family Event.
To encourage participation in Research Projects where appropriate/available to us
99 Great Cambridge Road,
International Hyperhidrosis Society (USA)
The only independent, global, non-profit advocacy and education organization serving the hyperhidrosis community.
Ichthyosis Support Group
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.
P O Box 1242
Tel: 0800 368 9621
Registered Charity N 1142457
LEPRA (The British Leprosy Relief Association)
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.
Mr T Vasey
LEPRA Health in Action
Let's Face It
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.
Mrs C Piff
Let’s Face It
72 Victoria Avenue
Westgate on Sea
Lichen Sclerosus Support Network
We are a not-for-profit organization whose mission is to empower people with Lichen Sclerosus by providing evidence-based education.
Every person affected by Lichen Sclerosus deserves accurate and thorough information. This allows them to make sound decisions on their health.
We also believe every provider who treats a patient with or possibly with Lichen Sclerosus should be well-informed on diagnosing, treating, and caring for that person.
That is why Lichen Sclerosus Support Network’s mission is to provide accurate and evidence-based education to patients and providers.
Located – Lancaster, PA USA
The purposes of Lipoedema UK are to relieve the needs of people with Lipoedema, in particular,
but not exclusively, by the provision of services, advice, information and support; and to advance
the education of the public, in particular those involved in the diagnosis, treatment and care of those
- Provision of services, advice information and support
- Advance the education of the public
- Advance the education of those involved in the diagnosis, treatment and care
Charity number: 1181312
LUPUS UK supports people who are diagnosed with Lupus and assists all those moving towards their diagnosis. The charity promotes public awareness regarding the Lupus condition and helps educate the medical profession. It funds research into the cause of the illness and funds a network of Lupus Nurses nationally. The charity has over 20 Regional Groups throughout the UK and provides a quarterly newsletter to over 5500 members.
St James House
Lymphoedema Support Network
Mrs B Finch
St Luke’s Crypt
Tel: 020 7351 0990
Fax: 020 7349 9809
Lymphoma Association (LA)
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
Mastocytosis Support Group
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.
The UK Mastocytosis Support Group
Group Leader : Mrs Jess Hobart
Melanoma Action & Support Scotland (MASScot)
Leigh Smith, MBE, TD, RGN
Melanoma Action & Support Scotland
Skin Cancer Charity
Please send all mail to:
208 Clyde Street
Scottish Charity Incorporated Organization Registration Number SCIO 040286
The experts in melanoma
Shaping a better future for melanoma patients
Commissioning and funding innovative research into the treatment and causes of melanoma, the deadliest form of skin cancer, while providing support and information for patients, carers and healthcare professionals.
We are unique in having a professional membership of melanoma clinicians, scientists and nurses at our core, allowing us to build our services aimed at public, patients and carers on the foundations of research and professional education.
How we Support Patients and Carers
Melanoma Helpline – Call 0808 801 0777
Melanoma Focus provides a confidential freephone service available to anyone in the UK who has a question about melanoma. Specialist NHS nurses are there to take calls at specified times during the week. This service is also available via www.melanomafocus.org . Our nurses work in the UK’s main melanoma hospitals and specialise in skin cancer treatment. They are experienced in talking to people with melanoma and are expert in providing information and support for patients and those who care for them.
You can find Melanoma Focus on:
LinkedIn Search ‘Melanoma Focus’
Salisbury House, Station Road, Cambridge, CB1 2LA
Tel: 01223 324359
Registered Charity No 1124716
Melanoma UK is a patient support and advocacy group, dedicated to helping skin cancer patients during all stages and fundraising to provide melanoma nurses and research.
If you are a melanoma patient or carer and need help or support, please don’t hesitate to get in touch. We are always here for you and will do our best to help. If you have any concerns about your skin cancer treatment or if you’ve got questions that you haven’t asked during your appointments, let us know and we’ll do what we can.
We have a free phone number 0808 171 2455 – don’t hesitate to call us.
The group was set up in memory of Jon Herron, a young man from Larne in Northern Ireland who sadly passed away in May 2008. Initially the aim was to fund raise and raise awareness of melanoma and started off as Factor 50, becoming Melanoma UK in 2013.
We were founder members of the parliamentary task force which was brought together by Sian James MP in 2010. We work with NICE and are called upon to give evidence during appraisals of melanoma treatments. Our aim is to provide support to as many melanoma patients and families as we possibly can.
Mrs Gillian Nuttall
42 Church Road
National Eczema Society
National Eczema Society is the UK charity for everyone affected by eczema. We provide expert information and advice about eczema through our website, publications, social media and nurse-supported helpline service. We also provide a collective voice for people with eczema, raising awareness of the condition, supporting research into new treatments and campaigning for better medical care. Our confidential helpline is free to call and open weekdays from 10am to 4pm. You can also email your questions to firstname.lastname@example.org.
National Eczema Society
11 Murray Street
Nerve Tumours UK
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.
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.
Nerve Tumours UK
44 Coombe Lane
Tel: (020) 8439 1234
Tel: (020) 8439 1234
Prurigo Nodularis International
With a global patient community of almost 5,000, Prurigo Nodularis International (previously known as Nodular Prurigo International) is the world’s largest support group (in the process of becoming a formal charity) for anyone living with the rare, debilitating and life changing skin condition, Nodular Prurigo or Prurigo Nodularis. Our vision is for a world where no one suffers with Prurigo Nodularis.
The mission of Prurigo Nodularis International is to create worldwide awareness of Prurigo Nodularis, including educating dermatologists in the impact of the disease. To drive efforts to develop diagnostic standards, care and treatment guidelines and pathways, as well as safe and effective treatments. A core part of our mission is to also create an engaged community of patients, so that no patient will ever face this disease in isolation, and to provide information and advice to help people living with Prurigo Nodularis improve the quality of their lives.
We are proud to be an Associate member of the International Alliance of Dermatology Patient Organizations – www.globalskin.org
If you are a patient or care for someone with Nodular Prurigo join our support group on Facebook: https://www.facebook.com/groups/prurigonodularis/
Nottingham Support Group for carers of children with eczema
The Nottingham Support Group for Carers of Children with Eczema (NSGCCE) is made up of carers of children with eczema and healthcare professionals. The information and support we offer is mainly web and electronic media based, and we offer this support without geographic boundaries.
There are around thirty patient information leaflets freely available on our website, which are also online streamed audio as well as downloadable documents and mp3 format.
NSGCCE has direct links to the senior clinicians and clinical trials teams in Nottingham.
Though unable to give specific advice, we can get very detailed answers to questions raised on the “Ask the Experts” service.
We disseminate information via our Blog, Email Alert Service and RSS Newsfeed as well as the website. Our blog also carries real life stories submitted by ordinary people about what they did to control their eczema.
On our website are links to publications that report on eczema related issues and where possible the site delivers video and audio podcasts made by the team and others if they relate directly to our cause.
We have a thriving Twitter community hosted at @eczemasupport.
There are comprehensive links on our website, one for professionals and one for lay people.
The NSGCCE operates on an entirely voluntary basis and therefore does not have any funds to award. However, we can give PPI feedback for research applications.
18 Marlborough Road
Pachyonychia Congenita Project
PC Project is dedicated to finding effective treatments and a cure for Pachyonychia Congenita, a painful genetic skin disorder, through helping and connecting patients, empowering research, and partnering with industry.
The most common features of PC are painful palmar-plantar keratoderma, thickened nails, oral leukokeratosis, follicular hyperkeratosis, and cysts. These signs are dependent upon the specific mutation. For example, not all patients have nail dystrophy, oral leukokeratosis, or cysts. All, however, will have painful plantar keratoderma by the time they reach adulthood which can make walking difficult and sometimes impossible.
As the only organization in the world to serve PC patients, PC Project encourages all who suffer to join the International Pachyonychia Congenita Research Registry (IPCRR). This patient registry gathers data through an online portal found on the PC website and provides free genetic testing to those who join. Patients in the registry, and their caregivers, are offered individualized support and are notified of studies for PC treatments, advances in research, and activities such as online forums, and patient support meetings. Currently, over 2100 patients are in the ever-growing registry.
PC Project also sponsors the International PC Consortium (IPCC) which facilitates collaboration among scientists, physicians, and other professionals interested in advancing research and translational therapeutics for PC. De-identified data from the registry is freely shared and available for research. PC Project invites all interested physicians, scientists and industry partners to join the IPCC, a special group, founded and fueled by love for these patients with severe unmet needs.
The vision of PC Project is a day when those who suffer from PC will live without excruciating pain, isolation, and embarrassment.
Our main aim is to provide support and advice to people diagnosed with Pemphigus or Pemphigoid and living in the UK. None of us are experts but, as fellow patients or carers, we have a lot of experience and empathy to share.
Most people coming to us find there is someone here who has or is going through a similar experience to them or their loved one. We have a very active and supportive Facebook group or people can register on our mailing list and we have a very up to date ands informative website.
We also want to expand awareness of Pemphigus and Pemphigoid diseases in order to speed up diagnosis and improve treatment options.
We try to maintain our awareness of any research or medical information related to the diseases and work with the medical community as patient representatives in several studies and programmes. We also work closely with the International Pemphigus and Pemphigoid Association and GlobalSkin.
Via the website
or to join our private Facebook site (UK Patients and their carers only)
Pseudoxanthoma Elasticum (PXE) Support Group
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.
Miss Elspeth M W Lax, or
Wg Cdr Bernard Lax MBE
15 Mead Close
Psoriasis and Psoriatic Arthritis Alliance (PAPAA)
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.
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.
Mr David Chandler/Mrs Julie Chandler
PO Box 111
The Psoriasis Association has three main objectives: to provide information, advice and support to those whose lives are affected by psoriasis; to raise awareness of psoriasis; and to promote and fund research into the causes, nature and care of psoriasis, and to publish and disseminate the results of that research.
The Association is advised by a Medical and Research Committee, 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 £6 million in research grants to projects in the UK. Applications are welcomed for PhD Studentships and small grants which must seek to address the top ten psoriasis research priorities , as identified by the James Lind Alliance Psoriasis Priority Setting Partnership (PSP).
The Psoriasis Association
Dick Coles House
Tel/Helpline: (01604) 251 620
Scleroderma & Raynaud's UK
Shingles Support Society
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.
Mr Nigel Scott
Shingles Support Society
41 North Road
Tel: (020) 7607 9661 (Office)
Tel: ( Advice) 0845 123 2305
Skcin is the only UK charity solely dedicated to the raising the awareness of skin cancer, promoting early detection and diagnosis, and sun safety. As this is our sole aim we are focussed on creating impact and tackling head on the rising cases of skin cancer statistics. The charity was born out of the loss of loved one to melanoma and we are committed to making a difference. 85% of skin cancers are due to overexposure to UV and therefore largely preventable. In line with our prevention is better than cure strap-line, our aim is to educate on sun safety and promote early detection and diagnosis.
We achieve our work via a suite of educational intervention programmes working with at risk and targeted groups to help spread the message of our work nationwide.
Sun Safe Schools
A FREE National Accreditation Programme, assisting primary schools in their duty of care and educating children on the importance of sun safety, to influence behaviours and prevent skin cancer. Assisting schools in implementing policy and sun safe teachings, with a robust and well established programme with consistent learning via annual renewable and measurable scheme. Our aim is to evoke cultural change and plant the seeds of sun safety at a young age and provide children with basic life skills regarding sun safety in effort to impact future behaviours.
Sun Safe Nurseries
The sister scheme of Sun Safe Schools that has been specifically developed by Skcin to introduce key sun safety messaging through song, book and basic activities that will help prepare pre-school children in understanding the importance of sun safety. The FREE scheme has proved hugely popular with very positive feedback from pre-school settings who believe that even children of pre-school age are grasping and understanding the ideas presented. Sun Safe Nurseries is a national, annual, accreditation scheme developed by Skcin to introduce sun safe messaging to pre-school children, whilst assisting pre-school settings in implementing a suitable sun safe policy and promoting the reinforcement of sun safety at home. Sun Safe Nurseries is a FREE on-line tool available to all nurseries, playgroups and pre-school settings, giving them access to a range of fun and engaging, resources to help them achieve their goal.
P O Box 9629
Tel: (07)834 450 671
Charity Registration No.116440
Skin Care Cymru
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.
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.
Skin Care Cymru
PO Box 612
Sturge Weber UK
The Charity was launched in 1990 by Contact a Family and is an independent voluntary support group for families and adults who suffer from this syndrome. Membership is entirely free to professionals, sufferers and their families.
To provide support and information on different aspects of the syndrome and to raise both public and professional awareness of the condition.
To promote medical research into the causes and treatment of this syndrome.
A family weekend is organised every eighteen months when doctors and other professionals talk about topics relating to the syndrome.
A newsletter is produced twice a year and information leaflets are available.
Telangiectasia Self Help Group
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.
Mrs D M Lawson
Telangiectasia Self-Help Group
39 Sunny Croft
Terrence Higgins Trust
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.
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.
Terrence Higgins Trust
314-320 Gray’s Inn Road
Tuberous Sclerosis Association
• Organising events and opportunities across the UK and virtually for those affected by TSC, allowing the TSC community to come together and feel less alone.
• Funding internationally-significant research into the causes, diagnosis, management and treatment of TSC that has the greatest impact on those affected by the condition.
• Campaigning on behalf of the TSC community to ensure that the TSC community has consistent and meaningful access to social support and healthcare provision.
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.
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.
Founder member; Mrs Bridie Nelson
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.
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.
The Vitiligo Society
7 Bell Yard
Tel: 0300 770 1249
Freephone: (0800) 018 2631
Fax: (020) 7840 0866
Vitiligo Support UK
Vitiligo Support UK is a patient support group, registered as a charity in England and Wales. We have two main objectives, which are:
- to promote and protect the physical and mental health of sufferers of vitiligo in England and Wales by the provision of support, education and practical advice and
- to advance the education of the public in all areas relating to vitiligo
We provide information and support primarily through our closed Facebook group, which allows people with vitiligo, and their parents or their friends to ask questions and to share experiences. We are also active on Twitter @VitiligoUK and on Instagram @VitiligoSupportUK.We have worked on a number of projects with the BAD including contributing as a patient to writing the Guidelines for Treatment of Vitiligo, and to the Phototherapy Guidelines 2015.
Vulval Pain Society
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.
To provide accurate, up-to-date, non-biased information to women with a wide range of vulval conditions, particularly vulval pain syndromes, and their partners, including details of terminology, diagnosis and treatments;
To report on conventional and complementary therapies.
To provide information on new research and information reported in medical and scientific journals and the general media;
To improve information and education on vulval pain for health professionals.
To provide women with the opportunity to share information and report their own experiences, by holding quarterly workshops around the UK that offer an informal environment for women to meet and discuss issues and treatments with other women and health professionals, and facilitating support groups such as the London, Birmingham and Bristol Vulval Pain Support Groups which also campaign for greater awareness of vulval pain within the general public, the media and the medical profession.
P O Box 7804
Wessex Cancer Trust (Skin Cancer Information Network)
Wessex Cancer Trust offers a counselling service to those living in the Wessex area. It aims to be of value to patients and their families, health professionals. teachers and others involved in education or prevention of skin cancer. It produces leaflets and information sheets on various types of skin cancer and on sun protection strategies. It has a professional nurse network of voluntary nursing contacts offering psycho-social support for patients and their families living with melanoma.
Wessex Cancer Trust
Suite 9a Fairways House
Mount Pleasant Road
Tel: (01722) 415071
Fax: (01722) 415071