New Booklet for Employers!
If you have Behcet’s and are in employment, then this booklet will help your Employers to understand the condition better and understand their responsibilities and learn how to help you. If you require a copy in the post, please message on info@behcetsdisease.org.uk
2017 Behcets for Employers 24 page doc
Dan – the Behcet’s Marathon man!
Dan is taking part in the Virgin London Marathon next month. You can sponsor him here:
Good luck Dan!
Volunteers urgently needed!
The Society Urgently Needs You …..Can You Help to Make a Difference?
The current Trustees need to recruit more members to the Board to allow the Society to continue with its work.
The Trustees have overall control of the Society and they use their skills and experience to actively help and support its everyday running.
There are six main responsibilities of a Trustee:
1. To ensure that the Society is carrying out its purpose for the benefit of the members.
2. To comply with the Society’s constitution.
3. To act in the Society’s best interest.
4. To manage the Society’s resources responsibly.
5. To act with reasonable care and skill.
6. To ensure that the Society is accountable.
We are currently planning an exciting Family Weekend, looking to fund more research and planning our annual conference. We have other ideas for the future but there are very few of us to take these forward.
Whilst we would welcome interest from those who have Behcet’s, we would also welcome anyone who is a carer, parent, family member or partner who could help the Society in this way.
The Society is financially secure but we need more trustees with time and enthusiasm to enable us to do more for our members
We meet every two months by teleconference and twice a year face to face.
HELPLINE VOLUNTEERS
Have you some time to spare and a good listening ear? Do you know about Behcet’s? Are you in the UK? Would you like to help make a difference to people living with Behcet’s or seeking a diagnosis by providing information, listening and signposting over the telephone? If yes, we would like you to apply to volunteer with the Society. In return we would offer training, guidance and ongoing support.
If you are interested in either of the above please email us at info@behcetsdisease.org.uk
International Conference report
A full report of the 17th International Conference on Behçet’s Disease, which took place in Italy in September 2016, is available here.
Behcet’s Syndrome Society – Annual Conference and AGM 2017 – Manchester
Register your free places and see more information here: Manchester 2017 Conference
Helpline suspended
Unfortunately, the BSS Helpline is temporarily suspended whilst we update all Policies and Procedures. We apologise for any inconvenience and hope to have it back up and running before too long. Should you have a general admin query or would like general signposting or information, please email info@behcetsdisease.org.uk or call our admin line 0345 130 7328.
Personal Independence Payment (PIP) assessment review
Have your say on the PIP assessment process!
The Government began this consultation process just before the …
summer holiday ‘Personal Independence Payment (PIP) assessment: second independent review call for evidence. The consultation closes on September 16th at 5pm.
Article on genital ulcer severity and quality of life
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4579635/pdf/13023_2015_Article_341.pdf
2016 AGM report
A report of the Annual Conference and AGM, which took place in October 2016, is now available here.
Drug funding survey
Sioned Bourke, a PhD student at Bangor University, is undertaking some research into how the NHS funds expensive drugs for rare diseases. She is asking patients and their carers from the UK to complete an online survey to help with her research. Please click on the link below to access the Bangor University participation information page and survey (on the right).
