Sue Farrington – Co Chair of RAIRDA
Chief Executive of Scleroderma & Raynaud’s UK (SRUK)
Sue is Co-Chair of the Rare Auto-Immune Rheumatic Disease Alliance (RAIRDA), a partnership established in 2016 to improve the quality of life of people living with rare autoimmune rheumatic diseases. She is also Chair of the Patient Information Forum, a UK wide organisation for people working in consumer health information – championing the role that quality information plays in the delivery of positive health outcomes.
Sue has over 25 years’ experience in senior leadership roles, working across the private, public and voluntary sector, with a background in strategic marketing & communications and broadcast journalism.
Dr Peter Lanyon – Co Chair of RAIRDA
Consultant Rheumatologist at Nottingham University Hospitals
Dr Peter Lanyon is a Consultant Rheumatologist at Nottingham University Hospitals NHS Trust and a Past President of the British Society for Rheumatology. In addition to general rheumatology, he has a particular interest in rare autoimmune rheumatic disease, integrating clinical research into service delivery.
He previously chaired the NHS England Specialised Rheumatology Clinical Reference Group, whose work championed the needs of people living with rare rheumatic diseases, delivered commissioning policies to enable access to high-cost treatments, and established levers for delivery of care in regional networks.
He is currently the Clinical Lead of the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS), NHS Digital. NCARDRS is a service to support clinicians and patients, service delivery, commissioning, and public health.
Chief Executive of LUPUS UK
Paul Howard initially joined LUPUS UK as a volunteer in 2011, helping to build the online presence of the charity and develop a strategy for using social media. He joined the staff team in October of that year as Projects Officer, helping to update processes within the charity for developing high quality patient information and data protection.
In March 2020, Paul took over as Chief Executive of the charity and joined the RAIRDA Board as the representative for his organisation.
John and Susan Mills
Chief Executive of Vasculitis UK
Husband and wife team John and Susan Mills worked together in their Peak District dental practice (where John was an NHS dentist and Susan was practice manager). Then, in spring 2001, John was struck down by a mysterious, debilitating disease, which proved to be a type of ANCA associated vasculitis – GPA – or granulomatosis with polyangiitis.
In 2009, John was asked to become chair of the Stuart Strange Vasculitis Trust (SSVT) and in 2010 the SSVT became Vasculitis UK.
Vasculitis UK has the aim of providing reliable information about all 18 types of systemic vasculitis and how to access effective treatment.
Dr Elizabeth Price
Consultant Rheumatologist at Great Western Hospital
Dr Elizabeth Price is a Consultant Rheumatologist at Great Western Hospital in Swindon. In addition to General Rheumatology she has a specialist interest in Sjögren’s syndrome and runs a multi-disciplinary Sjögren’s clinic accepting tertiary referrals. She currently focuses on extraglandular manifestations of the disease and clinical research into Sjögren’s, and is a member of the steering committee for the UK Primary Sjögren’s syndrome registry.
She is a Past Medical President of the British Sjögren’s Syndrome Association and a Past President of British Society of Rheumatology.
Director of Operations at Vasculitis UK
Zoi Anastasa is the Director of Operations at Vasculitis UK. She was diagnosed with GPA vasculitis in November 2014 and was lucky to get an early diagnosis, as well as reacting well to the treatment. However, vasculitis has changed her life.
Zoi started as a volunteer at Vasculitis UK in 2015 and was a Trustee before starting her role as their Director of Operations. She currently represents Vasculitis UK in the European Organisation for Rare Diseases (EURORDIS) as a member of the European Patient Advocacy Group in the ERN-RITA (the network dealing with Rare Immunodeficiency, Autoinflammatory and Autoimmune diseases). She is active in her local vasculitis support group, as well as in the Patient Participation Group of her local GP surgery.
Outside of work Zoi volunteers a few hours weekly for a charity that offers a safe community space for women from forcibly displaced backgrounds. In the past she has worked as a tutor in mathematics, as an admin, as a business manager, and until recently was working at a secondary school supporting students who have English as an additional language, mostly refugees.
Working alongside other patient advocates and patient organisations, she would like to try to make the world a better place for all those who suffer from a chronic illness.
Trustee of the British Sjögren’s Syndrome Association
Pat spent her working life as an accountant in private practice, retiring in 2013.She then spent some years on the board of the National Institute of Health Research Clinical Research Network: Kent Surrey and Sussex, until she moved from the area in 2019.
Pat was diagnosed with Sjögren’s syndrome in 2010 and joined the British Sjögren’s Syndrome Association (BSSA) soon afterwards. Pat was then appointed as a trustee of the BSSA in October 2022, and has joined the RAIRDA board as a representative of the organisation.
The BSSA is dedicated to providing mutual support and information to individuals with Sjögren’s Syndrome. It offers a helpline, a variety of literature, an annual medical meeting and also annually awards a research grant.