Help create a national register for people with rare rheumatic diseases

Please see this ‘Patient and Public Involvement’ poster

PPI is now mandated for all medical research that affects patients.  If you’d like to help, please get in touch with Dr Fiona Pearce to share your views on the topic.  Dr Pearce needs to engage with a small group of people with rare autoimmune rheumatic diseases (of which Behçet’s is part) who would like to contribute to her research, by influencing the research questions, methods, interpretation and communication of results. 

May 30th, 2019

New Merchandise Available

The first items of our new range of merchandise are now available. We currently have pens and trolley token keyrings and will be adding more new items to the range soon.

Head to this page for details on how to order and to download the order form.

May 3rd, 2019

Amazon Smile

We’re now registered on Amazon Smile. This means that when you shop through the Amazon Smile link, you can donate 0.5% of the net purchase price of eligible items to us! It only works if you shop through a browser, not through the app. To try it simply click on the image above, select Behçet’s UK as your charity of choice, and do your shopping as normal.

Frequently Asked Questions can be found here.

Thank you for your support. Happy shopping!

April 25th, 2019

Dragonfly TV: Casting call for patients

A medical science series is being made for the BBC. In this programme, they want to showcase the best, latest diagnostic medicine in Britain and to help patients who previously have not been able to find a diagnosis for their condition. They got in touch through the RAIRDA website.

Dragonfly, the award-winning company behind acclaimed series such as BBC1’s Ambulance and One Born Every Minute and BBC2’s Surgeons: At The Edge of Life is making a new series bringing twelve of the UK’s sharpest medical minds and combining their expertise to transform the lives of patients who are looking for a second opinion to their medical mystery.

If you’d like to find out more about what’s involved, or are potentially interested in taking part, call the team on 020 7 033 2252. Alternatively you can email us at enquire@dragonfly.tv

Dragonfly is one of the UK’s leading TV production companies and has experience of working with people with medical issues. Read more about us at http://www.dragonfly.tv/
Enquiries will be treated in the strictest confidence, in accordance with Dragonfly’s Data Protection Policy: http://www.endemolshineuk.com/contributor-talent-privacy-notice/

March 22nd, 2019

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

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