We’re supporting this year’s Rare Disease Day campaign by Rare Disease UK. We’ll be sharing some facts or “rare stars” about Behcet’s over the next couple of weeks. You can make your own “rare star” to spread awareness about Behcet’s and to share your personal story by going to: rarereality.raredisease.org.uk & if you do and you share it on social media, let us know by tagging us & we will share a few on our own social media pages!
On 19th October 2018 the board of trustees formally voted in favour of renaming Behçet’s Syndrome Society to Behçet’s UK.
Why change the name?
The prime goals of the society are to support our members, reduce the time to diagnosis for patients and promote research into Behçet’s. This will be achieved by raising awareness of Behçet’s to the wider public, including medical professionals.
When the society was formed in 1983 the term syndrome was widely used, there has since been much debate among medical professionals whether Behçet’s is a disease or a syndrome with many now favouring term disease. Renaming to Behçet’s UK allows us to step away from this ongoing debate.
Although we welcome members outside the UK our constitution states that we exist for the benefit of all members in the UK. As Tony stated in our autumn newsletter Behçet’s UK sends a clear message that this what we are here for.
To quote the famous advertising slogan Behçet’s UK now “does exactly what it says on the tin” it helps us achieve our prime goals, here in the UK, exactly as Judith Buckle intended when the society was formed.
Where are you in the rename process?
We are now registered with the Charities Commission as Behçet’s UK and we are completing the process of formally notifying organisations of our name change.
We have started the process of updating to Behcet’s UK on social media, so please bear with us if you see both names for a while, but we are waiting for our new logo to complete our rebrand.
Why call it a rebrand?
These days every charity has to take a leaf out of the book of large corporations to promote themselves. These corporations obviously didn’t start large, they started with a product or service and with that their personality aka their brand grew.
For Behçet’s UK rebranding isn’t about change it’s about building on what we have been doing and producing a consistent professional image which is familiar and memorable which will in turn lead to increased trust and support.
As a small charity the luxury of brand consultants are beyond our financial grasp however we can still apply the same principles and therefore the board of trustees have instructed an independent graphic design company to produce some logo designs which will allow us to develop our brand.
When will we see the new brand?
Once our new brand has been agreed by the board we will start a soft rollout of across our social media platforms and communication methods. To keep costs down we have already reduced stocks of printed materials and merchandise so we will roll out the new brand as stocks are used up.
For current Behcet’s UK members keep your eyes peeled for our Spring 2019 Newsletter!
How will you spread the word? Will it lead to confusion?
“Formerly Behçet’s Syndrome Society” will be prevalent on all social media, literature and communication methods for the foreseeable future. We will also reroute existing URLs and email addresses as long as necessary.
If you have any further questions, please don’t hesitate to get in touch via firstname.lastname@example.org or telephone 0345 130 7328
Our BSS Christmas cards have now sold out and in record time this year! Thank you so much to those who bought them.
Our fabulous Christmas Cards hand made by Jan Mather and her Mum are on sale now. Click here to find out how to place your order
Hypertensive and heart medication containing valsartan has been recalled around the globe, having been contaminated with a substance believed to cause cancer.
One of the most important aspects of this recall is that those taking valsartan understand that they should not stop their treatment before seeing a medical professional.
MyTherapy have created an infographic explaining the key points regarding the valsartan recall.
With 1 in 3 people living with hypertension, it is likely you and your readers know of someone taking valsartan. We therefore encourage you to share the infographic to help ensure that everyone affected is aware.
09:30 – 10:30 Registration and refreshments
10:30 – 11:25 AGM 2018
11:25 – 12:30 Conference 2018 – Morning Session
12:30 – 13:30 Lunch
13:30 – 16:30 Conference 2018 – Afternoon Session
Tickets to this event are free to members and anyone with Behçet’s disease and their family. You will need to register each person attending via https://www.eventbrite.co.uk/e/bss-2018-agmconference-bristol-tickets-42709026849, letting us know of any mobility, dietary or other needs.
Read June 17 edition of Rare Revolution Magazine here. The article on Behcet’s on page 38!
If you have Behçet’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 email@example.com