A self-help organisation with more than 2200 members, the BSSA is dedicated to providing mutual support and information to individuals affected by this disabling disease. We have regional support groups throughout the UK whose members include sufferers and supporters who work together in helping one another cope with the day-to-day challenges of this debilitating and distressing condition. The BSSA also has a helpline, we distribute a variety of literature including an informative quarterly newsletter and we award an annual research grant. There is currently no cure for Sjögren's Syndrome and the cause is still unknown.
BSSA aims and objectives are:
Benefits for joining the BSSA:
UK membership: £25.
Overseas membership: £30.
Even if you are not a member of the BSSA, you are welcome to make an initial call to our members’ helpline. If you would like to continue to use it further, we do ask that you become a member, as without this vital financial contribution, this helpline would not be able to operate.
Office Hours: 9am - 2pm, Mon to Thurs (answer phone facility out of hours).
If you need to chat to a friendly, listening ear about Sjögren’s Syndrome affecting your life, please call our members’ helpline. The helpline is available between 9.30am – 4.00pm, Monday to Wednesday and 9.30am - 8pm Thursday and Friday. Remember, if your call is not answered immediately, please be patient as a voicemail facility is available. Please leave your name and telephone number and your call will be returned.
Please note, the helpline is for advice only, for all other enquiries please call the BSSA office on 0121 478 0222.
Mrs Linda J Stone OBE - Chairman
Linda Stone is chairman of the BSSA. Diagnosed with Sjögren’s Syndrome in 1990,
when her children were still at primary school, Linda became chairman in 2002. She
leads the Trustees to develop the BSSA and the services it provides. Linda is also the patient/BSSA representative on the TRACTISS steering committee and represents the
BSSA at the Sjögren’s Syndrome Foundation of America annual conference. A former President of the Royal Pharmaceutical Society of Great Britain, Linda continues to
practice as a pharmacist. With a background in community pharmacy, she now works
mainly in the area of professional regulation.
Dr Elizabeth Price - Medical Council President
Great Western Hospital, Swindon
Dr Elizabeth Price is a BSSA Trustee and the President of the BSSA Medical council. She is a consultant rheumatologist who has a specialist interest in Sjögren’s Syndrome and runs a specialist Sjögren’s clinic at the Great Western Hospital in Swindon. Her interest in Sjögren’s dates from her Research Fellowship at The Kennedy Institute in London where she completed an MD thesis under the supervision of Prof Venables. She currently focuses on extraglandular manifestations of the disease and clinical research into SS and is a member of the steering committee for the UK Primary Sjögren's Syndrome registry. She writes articles for the BSSA newsletter, supports the associations Helpline ladies and assists in the awarding of BSSA research grants into SS. Previously she has organized the programme for the BSSA medical meeting.
Professor Simon Bowman - Medical Council Vice President
Queen Elizabeth Hospital, Birmingham
Professor Simon Bowman is the Vice President of the Medical Council of the BSSA. He is a Consultant Rheumatologist at the Queen Elizabeth Hospital in Birmingham. For over 10 years with Dr John Hamburger and Miss Saaeha Rauz (and now with Dr Andrea Richards, Dr Francesca Barone and Dr Ana Poveda-Gallagher and other colleagues) he has provided a multi-disciplinary Sjogren's Syndrome Clinic. He has had a longstanding interest in designing symptom questionnaires and disease assessment measures for use in clinical trials of new medications in Sjogren's Syndrome. He has been co-convenor of the European League against Rheumatism's task force on Sjogren's Syndrome. He is a member of the organizing committee of the UK Primary Sjogren's Syndrome Registry. He is currently leading the TRACTISS study of rituximab (an anti-B- cell therapy) in Sjogren's Syndrome in the UK. On the Medical Council he has organized the programme for the 2012 annual patient meeting in Birmingham and worked with colleagues over the years to develop the Association, written articles for the BSSA newsletter and helped organize the award of research grants by the Association.
Mr John Hamburger
School of Dentistry, University of Birmingham
Mr John Hamburger is a BSSA trustee and member of the BSSA medical council, who writes articles for the BSSA newsletter and involved in the awarding of research grants provided by the BSSA. He is Senior Clinical Lecturer & Honorary Consultant in Oral Medicine at the University of Birmingham School of Dentistry and the Service lead for Oral Medicine. He has also held the office of President of Birmingham Medical Institute Section of Odontology and President of British Society For Oral Medicine. He is Author/Co-author of more than 40 peer reviewed journal papers and 50 published abstracts on oral mucosal disease and SS plus co-author of 2 books and contributor of chapters in 3 further books. Mr Hamburger has delivered more than 250 local and national postgraduate lectures and courses. He works with Dr Simon Bowman and Miss Saaeha Rauz in a multi-disciplinary SS clinic. He is currently involved in research into SS including the UK Primary Sjögren's Registry.
Mrs Barbara Preston
Barbara Preston is a patient representative on the BSSA board of trustees. In 1994 Barbara, a working mother of two was diagnosed with SS. In 1998 She set up the Liverpool patient support group for the BSSA, which she ran for 10 years before joining the board of trustees. She is a lay member of the UK primary SS registry committee and the BSSA’s representative on the International Sjögren's Syndrome Network.
She has attended the AFGS - Association Française du Gougerot-Sjögren Symposium and manned stands at the British Society of Rheumatology’s annual meetings on the BSSA’s behalf.
Professor Wan-Fai Ng - Rheumatology
Newcastle University Hospital
Professor Ng is a Professor of Rheumatology at Newcastle University and the chief investigator of the United Kingdom Primary Sjögren’s Syndrome Registry (UKPSSR, www.sjogrensregistry.org). He qualified from Cambridge University and completed his postgraduate clinical training and PhD study in London. Prof. Ng’s research programme focuses on understanding the relationships between biological changes in primary Sjögren’s syndrome and clinical manifestations in particularly fatigue and lymphoma development. He is a co-director of the Newcastle Biomedicine Experimental Arthritis Treatment Centre and deputy director of the Clinical Research Facilities at Royal Victoria Infirmary.
Dr Elizabeth Price - Medical Council President - Rheumatology - Swindon
Professor Simon Bowman - Medical Council Vice President - Rheumatology - Birmingham
Mrs Linda J Stone OBE - BSSA Chairman
Mr John Hamburger - Dental - Birmingham
Dr Wan-Fai Ng - Rheumatology - Newcastle University Hospital
Miss Saaeha Rauz - Ophthalmology
Birmingham and Midland Eye Centre, University of Birmingham
Miss Genevieve Larkin - Ophthamology
Kings College, London
Dr Nurhan Sutcliffe - Rheumatology
St Barts, The London NHS Trust
Dr Monica Gupta - Rheumatology
Gartneval Hospital, Glasgow
Dr Francesca Barone M.D., Ph.D.
Wellcome Trust Clinician Scientist, Centre for Translational Inflammational Research, School of Immunity and Infection, College of Medical and Dental Sciences, University of Birmingham Research Laboratories, Queen Elizabeth Hospital, Birmingham
Dr Michele Bombardieri, MD, PhD
HEFCE Clinical Senior Lecturer and Consultant Rheumatologist, Centre for Experimental Medicine and Rheumatologist, William Harvey Research Institute, Queen Mary University of London and Barts' Health NHS Trust
Dr Anwar Tappuni, BDS, LDSRCS, PhD, MRACDS (OM), FHEA
Academic Lead for Oral Medicine - Institute of Dentistry, Barts and The London School of Medicine and Dentistry
Heather - Charity Manager
Sara - Communications and Fundraising Officer
Bridget - Members’ Helpline
Ann Marie - Members’ Helpline
Eleanor Bron is a writer and actress. She was extremely fortunate as a child, in that she was able to attend a grammar school and to go on to enjoy a university education at a time when this was all paid for by the state. She read Modern Languages at Newnham College and it was at Cambridge that she met and worked with Peter Cook, John Bird and John Fortune.
She started her career working with them during the ‘satire boom’ of the 1960’s. After two years with Peter Cook’s Establishment cabaret in London and New York, she returned to England and continued to work both in comedy and drama, on radio and television, theatre and film. Her roles in the theatre include Hedda Gabler, Jean Brodie, Cleopatra, Jocasta, Yelena in Uncle Vanya, and Amanda in Private Lives. On television, as well as writing (with John Fortune) and performing in their comedy series, she has appeared in Rumpole of the Bailey, Absolutely Fabulous, Casualty 1909, Midsomer Murders and Foyle’s War and in many dramas.
Among films in which she has appeared, are Help; Bedazzled; Women In Love, The Heart of Me,Wimbledon and the House of Mirth. She greatly enjoys recording audio-books, including her own novel. Other writing includes several books of memoir and some poems and song cycles.
She has two older brothers, Gerry, a record producer, and Anthony, a professor of Ophthalmology.
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