Genetics Alliance UK
A national alliance of patient support groups for all those affected by genetic conditions. Useful source of information, expertise and support for all.
(Previously Long Term Conditions Alliance) is the new umbrella organisation established by and for the voluntary sector. It brings together all national voluntary organisations representing users of health and social care to give them a stronger voice in policy-making.
Rare Disease UK
A national UK alliance of patients, doctors, specialist researchers, health care planners, politicians and industry in pursuit of the shared goal of high qauality healthcare for paitents and families living with rare disease.
Long Term Conditions Alliance Scotland (link not available at the moment 18.4.18)
LTCAS vision is for a Scotland where people with long term conditions enjoy, not endure, full and positive lives – lives free from discrimination and supported by high quality services.
EU Public Health
Link to EU Public Health rare disease section
Skin Care Campaign Scotland (link not available at the moment 18.4.18)
Campaigning for improved health care services for all affected by skin conditions
Skin Care Cymru
Skin Care Cymru is a voluntary charity promoting the cause of Dermatology patients on committees, panel and forums in Wales and the UK.