UK-AILD works closely with the PBC Foundation, PSC Support and AIH Support. These are disease-specific patient groups with over 15,000 members between them (in what are all rare diseases). They are full partners in the UK-AILD project, and representatives from each group sits on the steering committee, with a rotating representative on the management group.
The UK-AILD Project includes a Patient Programme that is unique, patient-initiated and patient-led. This programme will:
- Identify the patient priorities for research ensuring a patient-centred approach;
- Develop (in conjunction with WS3) a novel “patient passport” for AILD to increase awareness of personal disease status and create a culture of patient partnership in disease management;
- Develop a specific research programme in a patient-identified priority area which will then be developed and delivered in conjunction with the UK-AILD investigators.
As a family of rare diseases, AILD is a challenge because public awareness is low and misconceptions about aetiological links to alcohol abound. UK-AILD therefore has an important educational role. We will fulfil this by:
- Publicising UK-AILD and key findings on this website (http://www.uk-aild.com/) and social media sites, including Facebook and Twitter.
- Working with the British Liver Trust to increase awareness around AILD, including the importance of early diagnosis, effective treatment and ongoing research;
- Harnessing the media resources of our funding and industry partners.
UK-AILD will raise important questions about how diseases are defined, and how risk is measured and perceived in disease management.
- PBC Foundation
The PBC Foundation (UK) Ltd is a charity offering support and information to PBC sufferers, their families and friends
- PSC Support
PSC Support is dedicated to helping people affected by Primary Sclerosing Cholangitis (PSC). PSC Support is run by a small team of volunteers, totally funded from charitable donations.
- AIH Support
AIH Support provide information and support to people with autoimmune hepatitis (AIH) and their friends/family.
LIVErNORTH is an adult liver patient support group serving the UK and based at the Freeman Hospital in Newcastle upon Tyne.
- British Liver Trust
The British Liver Trust is the leading liver charity in the UK for all adult liver conditions. The Trust works to pioneer liver health and reduce the impact of liver disease through awareness, care and research.
- Children’s Liver Disease Foundation (CLDF)
Children’s Liver Disease Foundation (CLDF) was formed in 1980 and is a unique national charity dedicated to taking action against the effects of all liver diseases of childhood.