About NASS
When was NASS founded?
NASS was founded by a group of patients, doctors and physiotherapists at the Royal National Hospital for Rheumatic Diseases in Bath in 1976. The prime mover in founding NASS was Dr Allan St John Dixon, MD, FRCP, who is still involved with NASS and who has had a long and distinguished career in rheumatology. He worked on the formation of NASS with Mike Tanfield, who became the first Secretary and with our first President, John Coates, both of whom had AS.
What is the role of NASS?
NASS provides information and advice to patients: patient education is one of the keys to the best possible management of AS and this will in turn bring about the best outcome for the individual concerned.
Guidebook
One of our most important publications is the Guidebook for patients which NASS distributes to hospitals and patients, free of charge. NASS has sent out over 130,000 copies of the guidebook since it was first written and it has been through a number of editions.
Newsletter
This is published twice yearly and includes up to date information about new drugs, information and comment from eminent rheumatologists and other health professionals, plus updates from local NASS branches and a popular correspondence column where NASS members share their worries, good ideas or tips.
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Support for branches
NASS forms and supports a network of branches around the country. Each branch is run by a committee of NASS members and is backed by a group of physiotherapists who support the branch members by providing a supervised exercise session each week. Sessions are normally held in a gym or hydrotherapy pool – sometimes both facilities are available. Supervised exercise is the core activity of each branch although some branches do develop social activities and some also raise funds to provide equipment for the hospital whose facilities they use.
Patient conference
NASS has in the past organised conferences for people with AS: they have taken place throughout the UK and happen every 2 to 3 years. They are an opportunity for NASS members and their families to hear from consultant rheumatologists, researchers and health professionals about the current developments in the treatment for AS and the genetic research into AS.
The last conference was held on 21 November 2009 at the University of Reading, Berkshire. Presentations are available to hear by using the following link: 2009 Conference Presentation Audio Files.
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Research
Britain is one of the 2 or 3 leading countries researching into this condition and other form of arthritis. NASS does not have the resources to influence pure scientific research but we have 2 important roles in the research field.
The first is to provide small grants. These may act to pump prime a small research project or to help tide over a project where there is a gap between the arrival of one large amount of funding and the next.
The second is that NASS members have played a vital role in participating in research projects: without patients many projects cannot take place at all.
NASS patients have contributed blood samples to the substantial work on genetics taking place at the Nuffield Orthopaedic Centre in Oxford. These samples can now be donated via a saliva sample (Oxford Genetic Research). This work on genetics produced some very exciting results in 2007 when 2 new genes implicated in AS were identified. The work, which is part of a substantial American, Australian and UK collaboration, continues the hunt for other genes involved in AS. Current thinking is that there are between 6-12 involved. (Read press release on genetics here.)
NASS members continue to take part in other important UK projects which are all working to increase our understanding of this complex condition and to improve the treatment which can be offered to patients. Further information can be found on our research site www.asresearch.co.uk.
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Counselling and advice
NASS receives regular daily enquiries from people with AS, their families and friends on a range of topics from information on drugs, exercise, research, and practical areas like insurance, car driving or the best domestic equipment to use.
One of the main issues with AS is the difficulty in diagnosing the condition: the average delay from symptom onset to diagnosis is still around 6/7 years and this can cause real problems for individuals. We receive many calls and emails from people who have just been diagnosed and for whom the diagnosis is a bolt from the blue. We also take calls from people who are sure they have AS but for whom a diagnosis remains elusive.
We provide information and support through the website and forum, our printed materials, through phone support and by putting people in touch with others who have experienced similar problems.
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Our involvement with Health Professionals
NASS attends all the major rheumatology conferences: the British Society of Rheumatology annual conference, which is in Glasgow in 2009, the European League against Rheumatism (EULAR) annual conference and the International Congress on Spondyloarthropathies in Gent which is held every 2 years. Their next conference will be in 2010.
These conferences are a chance to meet and inform health professionals about the work of NASS; to raise the profile of AS as a condition and to keep up to speed with the latest developments in the treatment and understanding of AS.
NASS members and the Director also attend and speak at local events run by health professionals whose purpose is to inform their local patients and improve their understanding and management of their condition.
Volunteering for NASS
Volunteers make an enormous difference to the work of NASS:
- volunteers run the local branches which are so important in providing a focus of support and a way to maintain and encourage exercise;
- all our trustees are volunteers; and
- volunteers help out in the office
We are now looking to expand our use of volunteers to help people with AS and help to raise awareness at local and national level. We are always looking for volunteers to help fulfil the following roles:
Awareness Raising: manning a stand at patient information days, disease awareness events or running a stall at a local event
Focus Groups: participating in group discussions to share idea on specific topics to determine the direction of our work.
Patient to Patient Telephone & Email Support: communicating, mostly by email, with people in a similar situation or on specific topics relevant to your own experience from the comfort of your own home.
Office Administration: helping out with administrative tasks in the NASS office.
Research: participating in medical research such as new treatments or discussion groups on existing treatments.
Speaking Out: attending meetings at local or national level, being interviewd for NASS publications and resources or external media activity.
Click here to find out how you can get more involved.
International Connections
Ankylosing Spondylitis International Federation (ASIF)
NASS was instrumental in the foundation of some of the similar societies which now exist in about 25 countries. They have formed into a world-wide special interest group called the Ankylosing Spondylitis International Federation (ASIF): their website is www.spondylitis-international.org.
The current Director of NASS is a member of the ASIF Executive Council and the current Chairman of NASS is the Vice President.
ASIF have designated the first Saturday in May as World AS Day. Click on the following link to read more: World AS Day Activities
Standing Committee of People with Arthritis/Rheumatism in Europe (PARE)
PARE is the patient arm of the European League Against Rheumatism (EULAR), an organisation established to
reduce the burden of rheumatic diseases on the individual and society and to improve the treatment, prevention and rehabilitation of musculoskeletal diseases throughout Europe.
NASS has an affiliation with PARE through ASIF which is a member of Standing Committee of PARE and as a member of the Arthritis & Musculoskeletal Alliance (ARMA), the UK representative of PARE.
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