Other Resources

Patient organisations with resources for people with skin conditions in Ireland

Some skin conditions are associated with other other conditions (for instance psoriasis is sometimes associated with psoriatic arthritis, a slightly higher risk of diabetes, high blood pressure, high cholesterol and metabolic syndrome.  It is also associated with a slightly higher risk of cardiovascular disease (angina, heart attach and stroke)).  The organisations below all have resources which may be helpful to you.

Albinism Fellowship UK & Ireland – support for skin and ocular conditions associated with albinism

Alopecia Support Ireland – support for people affected by alopecia

Arc Cancer Support Services – supporting all people affected by cancer

Arthritis Ireland – supporting people with arthritis, including psoriatic arthritis

Asthma Society – supporting people with asthma

COPD Support Ireland – supporting people with chronic obstructive pulmonary disease 

DEBRA Ireland – supporting people with epidermolysis bullosa (EB)

Diabetes Ireland – supporting people with type 1 and type 2 diabetes

HS Ireland – supporting people living with HS 

Ichthyosis Support Group – United Kingdom & Ireland

Irish Cancer Society – supporting people with cancer, including skin cancer  

Irish Heart Foundation – information and resources about heart health and stroke

Irish Kidney Association – supporting people with renal transplants

Irish Red Cross – Ireland, run free one-to-one skin camouflage training

Marie Keating Foundation – supporting people with cancer, including skin cancer  

Melanoma Support Ireland Patients’ Network – supporting melanoma patients in Ireland

OCD Ireland – information and support for trichotillomania (hair pulling disorder)

Patient Advocacy Service – support to make complaints regarding care in public hospitals

Rapunzel Foundation – supporting people with hair loss (alopecia)

The Sharon Rice O’Beirne Melanoma Trust – raising awareness of melanoma skin cancer

 

International skin patient organisations and resources 

Alopecia UK – United Kindgom

Altogether Eczema – Global network for eczema and atopic dermatitis

Canadian Skin Patient Alliance – Canada

Changing Faces – UK, charity dedicated to helping people who have a disfigurement

Cutis Marmorata Telangiectatica Congenita (CMTC) & Other Vascular Malformations (OVF)Netherlands / Europe

Coalition of Skin Diseases – USA / Global

Cutaneous Lymphoma Foundation– USA

DEBRA International – Global

Eczema Association Australasia – Australia  

European Federation of Allergy and Airways Diseases Patients’ Associations – European

European Hidradenitis Suppurativa Foundation (EHSF) e.V. – European

Europso – European (Psoriasis) 

Foundation for Ichthyosis & Related Skin Types – United States of America

Ichthyosis Support Group – United Kingdom & Ireland 

International Alliance of Dermatology Patient Organisations – Global, with resources for rare conditions

International Eczema Council – Global

International Federation of Psoriasis Associations – Global

GO – Lichen Sclerosus – Global Organization for Lichen Sclerosus (website pending)

Lymphoma Action – UK

MacMillan Cancer Support– United Kingdom

Melanoma Focus – United Kingdom

Melanoma Patient Network Europe – European 

National Eczema Association – United States of America

National Eczema Society – United Kingdom

National Psoriasis Foundation – United States of America 

National Rosacea Society – United States of America

Pemphigus and Pemphigoid PEM FriendsUK and International

International Pemphigus & Pemphigoid FoundationGlobal

Pityriasis Rubra Pilaris (PRP) Support Group – Global

Psoriasis Association – United Kingdom

Psoriasis Vietnam – Vietnam

Under the Same Sun – United States of America & Canada (resources about Albinism available in English, French and Swahili/Kiswahili)

Urticaria Network – Germany / International

Vitiligo Support and Awareness Foundation (VITSAF) – Global

 

Dermatology Resources & Information

 

ISF Campaigns

Take Action: treatment for severe eczema still not available in Ireland (2020)

#AskHowIFeel psoriasis campaign (2018-19) 

#Protect And Inspect & Everyone Under the Sun skin cancer prevention campaigns 2017 to date

#Five17Eight hidradenitis suppurativa campaign 2015-17

#SaySomething psoriasis campaign 2014-2017

 

Reports

PSO What? Fighting back against psoriais: A Report by the PSO What? Taskforce (2017) – A collaboration led by LEO Pharma and the UK-based Patients Association, in association with the Irish Skin Foundation

Burden of Psoriasis Report: Epidemiology, Quality of Life, Co-morbidities and Treatment Goals (2015) – A collaboration between the ISF, Novartis Ireland and NUI Galway J.E. Cairnes School of Business and Economics