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

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

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

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

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

BSS 2018 AGM and Conference

Our 2018 Conference and AGM will be held on Saturday 20 October at the Doubletree by Hilton Hotel in Bristol. This is only 5–10 minutes’ walk from Bristol Temple Mead Station and has complementary parking and disabled badge holder parking on site.
The venue is fully inclusive and accessible. The hotel has some fully accessible rooms, and guests will be able to obtain the special conference room rate – please say that you are attending this conference when booking. There are many other hotels and B&Bs close to this venue, including Novotel and Holiday Inn Express (opposite the station).

Programme 2018


09:30 – 10:30 Registration and refreshments

Join us before the AGM and conference starts for a tea, coffee and pastry.
This is a great chance to meet trustees, members and families also affected by Behçet’s.

10:30 – 11:25 AGM 2018

Welcome and report from the Chair: Tony Thornburn
Financial report: Alan Lane
News from the Society: Judi Scott and Gemma Darlow
The Judith Buckle Award: Richard West
AOB: Questions from members

11:25 – 12:30  Conference 2018 – Morning  Session

11:25 – 11:30 Introduction: Rachael Humphreys
11:30 – 12:00 Post contract, how have we done? Professor Farida Fortune CBE
12:00 – 12:30 The Eye in Behçet’s Disease: Professor Miles Stanford

12:30 – 13:30 Lunch


13:30 – 16:30 Conference 2018 – Afternoon Session

13:30 – 14:00 Why are Behçet’s patients always tired? Dr Amal Senusi
14:00 – 14:30 Nutrition for Behçet’s patients: Professor Farida Fortune CBE

14:30 – 14:50 Tea, coffee and cake break

14:50 – 15:20 Diet and Microbiome in Behçet’s Disease: Dr Graham Wallace
15:20 – 15:50 Behçet’s Patient Centres update: John Mather
15:50 – 16:25 Medical Panel Q&A
16:25 – 16:30 Conference close

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.

July 3rd, 2018

BSS Annual Report and Accounts 2017

Annual Report and Accounts 2017

October 12th, 2017

Bio-Behcet’s Research Trial

Click on the poster and contact details below:

August 25th, 2017

Rare Revolution Magazine – Behcet’s article

Read June 17 edition of Rare Revolution Magazine here. The article on Behcet’s on page 38!

 

August 22nd, 2017

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