- Supporting people living with PBC in over 80 countries.
- Providing accurate, up-to-date information on PBC.
- Raising awareness of PBC & its impact on quality of life.
- Advocating for PBC patients & promoting understanding.
- Facilitating and driving research into PBC and its symptoms
- Working with others on our mission to find a cause & cure.
The PBC Foundation is a UK based charity. Established in 1996 in Edinburgh, we were founded on the principles of providing PBC patients, their family and friends with accurate, up-to-date information, and the belief that people shouldn’t receive support on the basis of their ability to pay. Our services are therefore provided free of charge to our registered service users, this includes our helpline, meetings, website, Self-care App, and publications such as the Compendium, ‘Living with PBC’ and our magazine the Bear Facts.
We now provide services to more than 20,000 patients in over 80 countries. Our support and information extend to healthcare professionals, as we work to educate them about PBC, raising awareness of the services we provide, by distributing detailed information on PBC at medical events, and by conducting extensive outreach work. We also collaborate with other bodies in the fields of medicine, pharmaceuticals, and patient advocacy to conduct research into develop better understanding, treatments and to find a cause/cure for PBC.
Read more about us and what we do in our support and services section. Our Annual Trustee Report also provides a summary of our work and how our services are funded.
Our Vision & Values
People affected by PBC are at the heart of everything we do, and the reason we strive to have a positive impact on their lives. We are committed to empowering patients, providing them with support and information, advocating for their needs, raising awareness, and working towards improved quality of life, and our vision of finding a cure for PBC. Everything we do is influenced by our values:
Care: Every single service we provide has been patient-led. We take time to listen: learning from others’ experiences, and understanding their challenges. We care about outcomes and want what’s best for everyone living with PBC.
Commitment: Our passion drives us to do everything we can to make a positive difference to the lives of those affected by PBC, making sure their voices are heard, and needs are met. We keep our promises.
Honesty: We are honest with ourselves and with others in everything we do, We say what we mean, we do what we say in order to build trust within the community.
Respect: We believe in a world of opportunity, of equity, of equality, and of inclusion where everyone, regardless of circumstance, can feel valued, heard, and seen as an important part of the community.
Transparency: We always put patients at the heart of every single decision we make, and ensure we are seen to do so. We bring openness and accountability to our decisions and actions.
By living within these values, we aim to empower the PBC community, bringing greater autonomy and control to people affected by PBC, helping them to take ownership of the decisions that impact upon their quality of life. By incorporating these values into what we do, we are able to embrace, support and be an active part of the international PBC community advancing knowledge, co-creating solutions and leading change.
Meet our Team
Our small but mighty PBC Foundation team are supported by 50+ active volunteers, our Board of Trustees, and International Medical Advisory Board. Together, we are dedicated to improving the lives of people living with PBC. Find out more about us and our team members:
Drawn into the world of PBC with his mother’s diagnosis in 1994, Robert has, in one way or another, been involved in PBC advocacy since even before the PBC Foundation was founded in 1996. An experienced and powerful patient advocate, Robert’s specialist subject is listening to the patient, and using the patient experience to improve the patient experience. An international leader, presenter, innovator, academic, committee member and author on a number of topics, his driver is to ensure the patient voice, and experience, is front and centre of every potential solution to the challenges they face. An agent for change, he has led various campaigns and innovations to improve the PBC patients’ quality of life on a multinational stage.
Mo was diagnosed with PBC in 2007 and has had 2 liver transplants. She began volunteering for the PBC Foundation following her second transplant in 2013 and joined the staff full-time in January 2023. Mo’s background is Policing, Information & Communications Technology, Service Support and Delivery, she left Police Scotland with almost 34 years’ service before joining the PBC Foundation. She is extremely passionate about patient support and advocacy ensuring that the patient voice is represented at all levels within the PBC community. Working closely with our partners Mo also assists with project management and ensures promotion of the patient experience. Mo is committed to supporting and empowering PBC patients around the world.
Alan joined the Foundation as Administrator in February 2009. For some years, as Head of Operations he oversees that everything runs smoothly within the office. Duties include supporting the CEO and board of Trustees, liaising with medical advisers to participate in our online activities, organising conferences and collating articles for “The Bear Facts”. With a keen eye for detail, he is the main contact for communication with many external bodies and is always on hand to support other members of staff. He supports the Foundation in many ways and is well known for his guided historic tours round his home town of Dunfermline on PBC Day.
Cheryll joined the Patient Services team in January 2023. Her career has spanned over twenty years of working in UK health related charities. Cheryll’s passion is supporting others to realise their potential and to feel empowered on their lives journey. Supporting a friend with a new diagnosis of PBC led Cheryll to the Foundation and she loves to now be a part of the organisation and to have the opportunity to shape the future of the services we provide the patient community. Cheryll looks after our volunteer network and loves nothing more than sharing self-care tools and techniques with as many of the PBC community as possible.
Jacqueline started at The PBC Foundation at the end of 2019 after 10 years in banking. The role of Trust and Grants officer is a very challenging and rewarding change of environment for her. Her main focus is to continue to source funding and grants, to ensure the Foundation can continue to provide its invaluable services to its members. She also works closely with Fundraisers, members and their families to support then with all events from coffee mornings and car boot sales to cycles and runs. If you need support and advice or have any information on anything funding or fundraising related please get in touch.
Linda has worked at the Foundation for over eleven years taking in a wide range of responsibilities. She was the trooper who held the office together during the Covid era and has also in her time led services for both patients and our Volunteers. Linda currently focusses on our patient community, providing first contact support, arranging and hosting meetings- both physical and virtual- and opening up opportunities for members of our community to meet and engage with each other: particularly in areas where there is no Volunteer. Linda also has the unenviable task of managing Robert’s diary and keeping him in the right place at the right time.
I joined the PBC Foundation in March 2019 on a part time basis as a bookkeeper. I have many years of accountancy experience, in a variety of different business and have worked in the charity sector for around 7 years. I record all the financial transactions into our accounting software. I produce monthly management reports to help support management and the trustees.
Collette Thain MBE
Diagnosed with PBC in 1994, Collette struggled mainly because there was no information or support to be had. Collette, with others, founded the PBC Foundation in 1996 and was relieved that support was offered from Hepatologists across the UK allowing her and others to help and offer information to all those in need. Receiving an MBE for services to PBC some years ago was not only a highlight of her life, but it brought much attention to the Foundation’s work. As Collette points out, emails and letters are not ignored when there is an MBE after one’s name! Collette has now taken a well-deserved rest from running the Foundation but continues to speak with members on the helpline offering information, support and of course her trademark – friendship.
- Robert Mitchell-Thain CEO
- Mo Christie Head of Patient Services
- Alan Sutherland Head of Operations
- Cheryll Alomai Patient Services Manager
- Jacqueline Sapsed Trust & Grants Officer
- Linda Butler Liaison Officer
- Fiona Stewart Bookkeeper
- Collette Thain Founder & Patient Liaison
Board of Trustees
Our Trustees are responsible for the governance and strategy of the PBC Foundation. They are responsible for ensuring that we are administered properly and that we can account for our activities, spending and outcomes.
They must act in the interests of the charity; operate in a manner consistent with our purposes and values; act with due care and diligence, and ensure that we comply with the law, specifically acting within the provisions of the Charities and Trustee Investment (Scotland) Act 2005.
Medical Advisory Board
Our Medical Advisory Board oversees our medical information. There is no information within any of our publications which has not been peer reviewed by at least some of our Medical Advisory Board. They also peer review any research projects to be funded by the PBC Foundation to ensure they follow best practice, are relevant to current PBC issues, and are serving the best interests of our registered service users, amongst many other criteria.