BEHÇET’S SYNDROME SOCIETY

Aims

• To provide information and support for people with Behçet’s disease and for those who care for them.
• To provide financial aid in hardship caused by Behçet’s disease.
• To foster education, collaboration and networking in the medical and allied professions with an interest in Behçet’s disease.
• To promote and assist with research into Behçet’s disease.
• To promote the cause of patient support groups and of rare diseases amongst the appropriate influential institutions, authorities and decision-making bodies and to provide them with information about Behçet’s disease.

Origins

Origins of the disease

A Greek physician called Hippocrates, writing in 500BC, described a cluster of symptoms that seems to be that of Behçet’s disease.
However, although various researchers wrote about this disorder after that time, it wasn't until 1937 that it got its name. A Turkish skin specialist called Hulushi Behçet published an article in a German medical journal in which he said he had noticed a characteristic set of symptoms in some of his patients which he thought all belonged to a specific disorder. He listed the 'classical' set of symptoms of mouth and genital ulcers with eye inflammation that identified it. Since then other symptoms have been added to the original list but the name of Behçet has remained.

Origins of the Society

The Society was formed in 1983 in York by Judith Buckle, a sufferer from Behçet’s disease. With friends from her local Church she held a fund-raising wheelchair push and raised enough money to start the Society. As a result of the publicity for the event, the newly-formed Society acquired around 60 members at its outset.

It had taken Judith 10 years to get a diagnosis and no-one, either amongst the public or the medical profession, seemed to have heard of it, so she thought something should be done about it. A Society should be formed so that people should be informed of its existence, sufferers should be able to get a diagnosis and treatment, and all involved should understand what the disorder was. No-one should ever again have to struggle like she had. At that time it was also early days for small specialised patient support groups so she was a pioneer in many ways.

Although the Society has grown from its original nucleus to its present size of over 1600 members its basic aims have never been forgotten.

Membership

• Membership is open to all.
• Members are not expected to take on any activities on behalf of the Society unless they wish to.
• The subscription is £10 per year and the subscription year begins on the 1st September. This is waïved in cases of hardship.
  Subs may be paid by cheque, postal order, cash or standing order.
  The Society doesn't do covenanting.
  The Society doesn't issue membership cards.
• Information, support and access to the help-lines are available to all.
• Any information given to the Society is fully confidential. Names and details of contacts made are not disclosed to anyone without prior permission from the member.
• The Society abides by the principles of the Data Protection Act.

Structure

The Society is a registered charity (number 326679)
It is managed by a committee (the Trustees), who are elected by the membership at each Annual General Meeting.

The Committee

The committee has a Chair, Vice-Chair, Treasurer, Honorary Secretary, Information Officer and several ordinary members.
Almost all members of the current committee have Behçet’s disease and it is a policy of the Society to ensure that the Society is run by a majority of sufferers.
The Society is administered entirely by volunteers, giving up free time and space in their homes to the running of the Society. The Society has no office or paid staff.

The AGM

The Annual General Meeting is held on a Saturday in October. The venue is moved around the UK to enable members in different areas to reach one over the years. The format consists of the formal business of the AGM in the morning followed by an address, usually by a speaker eminent in Behçet’s, in the afternoon. A lot of time is allowed for members to meet and talk to each other at this event.

Do you want to help the Society?

The committee would be very pleased to hear from anyone who wants to help or has any ideas contributing to the running of the Society.