European Patients' Forum
The European Patient's Forum (EPF) is an umbrella organisation representing over 50 different patient's organisations across 27 European member states. The EPF provides a voice for patients and patient organisations at the level of EU policy making and also acts to support national and international patient organisations. The EPF website includes a library of previous EPF work and publications and an online form to get in touch with the Forum team.
The Association of Medical Research Charities
The Association of Medical Research Charities (AMRC) is an organisation representing many of the leading medical and health research charities in the UK. As well as providing resources and support for its members the AMRC website also has information and discussion on topics such as patient participation in research and ways of sharing and protecting personal information in health research.
HealthTalkOnline is a website run by the charity DIPEx which provides video and audio clips of real patients discussing the day-today experience of living with illness and disease. The website covers a wide range of conditions including most of those being investigated by the STEMBANCC project and also provides additional information on treatment choices and support. HealthTalkOnline has a dedicated section on the experience of donating blood and tissue samples to medical research (known as biobanking).
The UK's largest health information website, NHS Choices has a comprehensive A-Z of conditions, with information, advice and the latest research news on each area. There is a also a dedicated section with information for carers and a 'behind the scenes' guide to popular media stories about health and science topics, including genetics and stem cells.
Condition-specific online resources
- Alzheimer's Research UK
- Alzheimer's Society
- European Parkinson´s Disease Association
- Parkinson's UK
- German Parkinson's Disease Network (german/english)
- German Parkinson Union
- UK National Health Service on Parkinson's disease
- Migraine Trust
- European Autism Interventions
- National Autistic Society UK
- Diabetes UK