Rare Disease Day 2019

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!

Find us @behcetsuk on Twitter, Facebook and now also on Instagram

February 15th, 2019

EURORDIS Black Pearl Awards 2019

Congratulations to our vice-chair!

Many congratulations to our vice-chair Richard West who will be receiving an award from EURORDIS at the Black Pearl Awards 2019! The award is in recognition of Richard’s admirable commitment of over 20 years as an advocate of rare disease issues on behalf of the Behçet’s community and his longstanding supportive partnership with EURORDIS.

If you’d like to attend the ceremony on Tuesday February 12th at the Hotel Le Plaza in Brussels tickets are available by following this link. Registration ends February 6th.

January 21st, 2019

It’s all in the name – Behçet’s UK

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 info@behcetsdisease.org.uk or telephone 0345 130 7328

Gemma Darlow
Administrator

January 8th, 2019

2018 AGM and Conference report

A full report of the 2018 AGM and Conference in Bristol is now available: 2018 AGM and Conference report.

January 7th, 2019

Christmas Cards – SOLD OUT!

Our BSS Christmas cards have now sold out and in record time this year! Thank you so much to those who bought them.

November 16th, 2018

BSS Annual Report and Accounts 2018

ON SALE NOW – BSS Christmas Cards

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

October 15th, 2018

Donate to us when you sell on eBay!

It’s not often that a really good ‘win-win’ deal comes along, which benefits everyone and effectively costs you nothing.

We are very pleased to announce (as long time eBayers and supporters of the BSS) that after a lot of effort by Julie Collier and others to jump through the many necessary hoops, the BSS has now been set up as a charity on eBay.

It is totally up to you how much of an auction you wish to donate to the charity, but the really brilliant twist is that even if you donate as little as 10% of your auction outcome to the BSS, eBay will refund your selling fees. For many auctions, this will mean that sellers’ fees normally payable to eBay effectively go straight to the BSS, so it costs practically nothing to you, and benefits to the charity are huge – all those small, but frankly annoying, £1.50 eBay fees you would have to pay anyway will soon add up for the benefit of Behçet’s disease patients.

All you have to do is remember to click the “Charity Auction” option and pick the BSS from the list.

So, if you are a keen eBayer, or only use it once in a while, why pay eBay when your fees, maybe plus a little extra, could go straight to the BSS? Happy eBaying everyone, and tell your friends. We have to smile every time we list something now… no fees to eBay, just a donation to the BSS!

(Text by Peter and Louise May)

July 25th, 2018

Drug Recall – What should you do?

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.

July 19th, 2018

RAIRDA

The Board of Trustees is most pleased to announce that our Society has become Affiliate members of the Rare Autoimmune Rheumatic Diseases Alliance (RAIRDA).  RAIRDA is a forum established to bring together clinical and patient organisations and other key stakeholders in order to improve care for people living with rare autoimmune rheumatic diseases. 

The alliance is made up of the following members and affiliate members.  Members: British Society of Rheumatology, LUPAS UK, SCLERODERMA & RAYNAUD’S UK, VASCULITIS UK. Affiliate members: British Sjögren’s Syndrome Association (BSSA) and now us!

RAIRDA has three aims.

  1. To raise the profile of the needs of people living with rare autoimmune diseases and their access to timely effective treatment
  2. To promote the implementation of best practice care and pathways
  3. To increase knowledge about patient care through better data

These chime closely with those that the BSS has striven to achieve since its formation in 1983.

So this is great news, as we move forward together to raise comprehensive awareness of Behçet’s amongst all clinicians within NHS primary, secondary and tertiary care, and promoting research into the cause, effects, treatment and management of this rare, complex and debilitating lifelong disease.

I shall be representing you all at their next meeting on 26 July 2018, and will report back thereafter.

In the meantime, more information can be found using this link: Click Here

Tony Thornburn

Chair

July 12th, 2018

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