Hello and welcome to our newly designed website. We hope you will find our site informative and easy to navigate. If you have any comments, please use the email address in the “Contact” pages – we will continue to develop the site and would appreciate your feedback. We do have plans for other information we want to include that we believe will be beneficial to both our members and anybody else who is searching this site.
I’m Jan Mather, the Chair of the Behçet’s Syndrome Society, and I was elected during the Annual General Meeting in 2006. I work with the Trustees, who are all very dedicated and committed to working on behalf of our members. Most of our Board members have Behçet’s disease themselves, which gives them a unique insight into this illness and the problems encountered because of it.
I’m sure you’ll discover through the pages of our website the services that our Society offers. From the helpline volunteers, who do a fantastic job in giving information – particularly to newly diagnosed patients, to the follow-up with information leaflets, lively newsletters, the co-ordination of local support groups, the running of AGMs and the awarding of grants to members experiencing hardship due to Behçet’s disease.
What I’d like to do is take 2 minutes to tell you about our past 12 months and the plans we have for the next year.
2007 has been a busy year, and our major projects have been:
- The recruitment of an external agency to raise funds on behalf of the Society.
- The grant award for this website is a direct result of this project.
- A review of our helpline to ensure that we are compliant with new legislation and also that we’re working towards best practice in this area and providing the best possible service to our callers.
- We’ve continued to support the North West project, with both its specialist Behçet’s clinic and the research it’s undertaking.
- We’ve attended our first Party Political Conference on behalf of our members. This is something we will be repeating in the future after the success of this year.
- We have supported the interferon alpha trial looking into better medication for people with Behçet’s disease. This research is ongoing and is being conducted by Professor Sue Lightman at Moorfields Eye Hospital.
- Finally, we’ve developed this website to be able to communicate more effectively and make our information more accessible.
However, we’re not sitting back on our laurels for 2008 and already have plans for the following projects:
- Partnership with a recruitment agency to recruit a paid Director on behalf of the Society.
- An appointment with the Disability Living Allowance Authority Board to put forward the case for Behçet’s patients, who are often misunderstood during these applications.
- A project being undertaken with medical professionals to review our information leaflets to ensure they give the most up-to-date information in a way that is accessible to patients, carers and medical professionals.
- The continued evolution of this website to use more facilities that will keep our members in touch with each other.
- Further applications to grant awarding bodies.
If you’re already a member, we hope you enjoy our site and continue to support us in the future. If you’re not a member, perhaps you’ll consider joining after surfing our pages or making a donation to our Registered Address. The provision of this information is only possible with the support of our members who pay their regular subscription and depend so heavily on the support of the Charity.
We’d like to thank the National Lottery for their Awards for All grant, which made the development of this site possible; Cubik for providing the technical know-how; and Clare, our editor, for all her hard work in getting the information loaded.
Yours, Jan
