How to set up a new ankylosing spondylitis society?

If there is no ankylosing spondylitis (AS) patient organisation in your country, the following may help you and your fellow patients to prepare the foundation of such a society which is extremely helpful for living with the disease.

Seek the support of at least one leading rheumatologist, who has a particular commitment to AS. If a person of this description were to join you as your medical adviser, this would give your society credibility in the eyes of other rheumatologists. Medical people are always concerned that patient groups can be lead or taken over, by people who have their own untested theories.

It is quite possible that your rheumatologist will have a patient index of AS sufferers. You could eventually contact them and arrange a meeting, perhaps in the hospital and invite them to bring their families along. In the case of most associations the invitations can only be sent out by the rheumatologists. You will not be allowed access to patients' addresses.
This meeting can be the start of a patient society and at that meeting you might make a start in recruiting a committee. If the members of the committee are elected in the inaugural meeting and if also a constitution is accepted by the participants, your new organisation may be officially registered immediately thereafter.
It would be helpful if you could recruit onto your committee an AS patient who is a qualified accountant to keep your financial records and prepare your annual accounts. You might attract the interest of AS patients who are journalists or work in public relations etc, who can bring your society to the attention of your national press. Associations have, in the past, made sudden advances in membership by the society and the disease receiving attention in journals and publications. Women's magazines are usually particularly interested in this type of subject.

Try to establish a constitution that is not too long or unnecessarily complicated whilst fitting the legal requirements in your country and gives your organisation charitable status. This naturally would mean that you should be able to operate tax-free. You will, therefore, need the assistance of a lawyer and perhaps you might find one who has AS.
The constitution of a society of patients in your country with another disease or the constitution of an AS society in a country with similar regulations may serve as an example.
The list of aims of AS societies may help you to define the aims of your national society.

Several of our ASIF member societies are able to obtain substantial funding from their governments or their regional/local governments. Many AS societies in existence around the world, are offshoots from larger arthritis societies, in their own countries. This can seem an attractive route as immediate funding and organisation is available.
However, this does lead to financial control being wholly or partly with people who are not particularly interested in AS but have a wider arthritis agenda. This has, over the years, produced in some cases, a conflict of interest and a less flexible AS society.

Discuss with your newly formed committee, the objective of producing a membership journal or newsletter, from time to time. Some AS societies produce one every quarter, others produce one twice a year. The objectives of the membership journal are several; one is obviously to keep your members informed about the affairs of your organisation and the events that you are arranging or have arranged. However, one of the most important aspects is to continue with the patient education programme. Members are anxious to know about latest research and, of course, drug developments. The research also means epidemiology. In the last fifteen years we now have much more information than was previously available. This means that more is now known about the impact of the disease on the individual and also the members of their families, including genetic inheritance. This epidemiology information has re-written the textbooks and it is important that the patients are kept up to date.
ASIF member societies would be willing to send examples of their journals or newsletters, on request. As long as creditation is given to the sister societies, they are willing for the articles to be re-produced or translated.

One of the objectives of many of the AS societies is to provide physiotherapy one evening a week in different parts of the country. This will take time, as you need to locate physiotherapists who are prepared to give this time. They are paid by various methods; in some countries a complicated procedure of patients insurance companies provide funding for the treatment. In most cases it may be simpler if each branch (a group with common AS physiotherapy) is run by a committee and has a bank account with a sum of money as a donation from your society to open it in the first place. Each patient that attends the evening physiotherapy session is charged a small sum by the branch committee. Collectively, this is usually enough to pay for one or two physiotherapists in the evening for one and a half or two hour's therapy. The therapy may take place in the physiotherapy department s of a hospital where there is a rheumatology department. This means that their physiotherapists are not only trained in rheumatology but also take a special interest in AS. The therapy may also take place in the gym hall and pool of an seniors health care facility or of a public school. The branches may hold fund-raising events at a local level, where their members and their families can socialise. By this method the branches can accumulate funds for their therapy.

It is important that patients should have this type of therapy support. Obviously they know they should be performing exercises on a regular basis in their home. However, we know it is difficult to always be motivated. Turning up to an evening group with friendly support from fellow sufferers and physiotherapists is a great source of encouragement. The physiotherapists can also spot the errors in our own programmes and encourage us to work harder. AS patients are generally popular with physiotherapists because they are willing to work hard and take their exercises seriously which brings rewards for the physiotherapists.

Think about arranging patient educational symposia. Hiring the facilities of a university in the holiday period may be the least expensive option. Keep moving the symposia around the country. Invite local specialists to participate in these lectures, for example, rheumatologists, specialists in Crohn's disease and ulcerated colitis, ophthalmologists to talk about uveitis, orthopedists to emphasise the importance of physiotherapy, surgeons to explain surgical possibilities, heart specialists to lecture on the association of AS with the heart etc. etc. The symposia running along these lines usually last a whole day. People will travel long distances to attend these meetings.

Consider eventually having an internet site. In the internet you will find good examples created by other AS societies. Include also a membership application form which can be printed off the site. This has proven to be a successful way to gain additional members. Look for a webmaster among the members of your society who is familiar with what is going on in your society and who takes care of the initial creation and updating of the site.
Whether your society has an own internet site or not: Do not forget to inform the ASIF webmaster about the new AS society. He will show the name and adress of your society within the ASIF website, to draw the attention of other AS patients in your country to your society.

Your AS society is invited to become an ASIF member. For the rights and duties of an ASIF member society, see "How to become an ASIF member?" and also the ASIF constitution.

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