Genetic Alliance UK are delighted to announce that their CONCORD research project is now live.
COordiNated Care Of Rare Diseases (CONCORD)
Have your say on how services should be coordinated for patients with rare and undiagnosed conditions.
Complete an online survey now: bit.ly/CONCORDsurvey
CONCORD is a research study which aims to investigate how services are currently coordinated for rare conditions and how they should be coordinated in the future. The study is funded by the National Institute for Health Research and is being led by researchers at University College London, in collaboration with Genetic Alliance UK and others.
We are currently looking for patients, carers and healthcare professionals to share their priorities and views about the coordination of care for rare conditions, via our online survey. For most people, the survey will take around 30 minutes to complete. The findings will be used to make recommendations with the aim of influencing policy.
Who can complete the survey?
You can complete the survey if you have a rare or undiagnosed condition; you have experience as the parent or carer of someone affected by a rare or undiagnosed condition; or you are a healthcare professional working in the field. You must be 18 or over to complete the survey. If you are under 18, your parent or carer can complete the survey for you.
Where can I get more information about the study?
There is more information about the study on the Genetic Alliance UK website bit.ly/CONCORDsurvey
If you have any questions, or you would prefer to complete a paper copy of the survey or answer the questions over the telephone, please contact Emma Hudson, Research Associate, UCL: email@example.com / 0207 679 1854.
The Bio Behçet’s trial
The Bio Behçet’s trial aims to understand more about the different ways of treating Behçet’s. It is a randomised controlled trial of two drugs – infliximab (Remicade) and alpha interferon (Roferon-A) – often used to treat Behçet’s disease.
If you have been diagnosed with Behçet’s and have not responded to treatment with other medications such as steroids or immunosuppressants, you could be eligible to take part in the trial.
Why is it important?
This could help to make a real difference to your quality of life, and in the process assist others in the future.
What should I do next?
If you would like more information about this study, contact a member of your usual Behçet’s care team or the contacts below. They will be able to discuss the study further with you, answer any questions you might have and let you know whether you are eligible to take part.
Donna Goymer – Addenbrooke’s (Cambridge), Lupus & Vasculitis Dept (Clinic 12), Addenbrooke’s Hospital, Hills Road, Cambridge, CB2 0QQ Tel: 01223 586835; Email: firstname.lastname@example.org
Helen Franland /Ayren Mediana – Aintree, Clinical Sciences Centre, Aintree University Hospital NHS FT, Lower Lane, Liverpool, L9 7AL Tel: 0151 529 5894; Email: email@example.com / firstname.lastname@example.org
Nardos Wakjira – Behçet’s Syndrome Centre of Excellence (London), Dental
Hospital, The Royal London Hospital, Turner Street, Whitechapel, London, E1 1BB Tel: 0203416 5000, ext: 46089; Email: Nardos.Wakjira@bartshealth.nhs.net
Zahira Maqsood – Birmingham City Hospital, City Hospital, , Research and
Development Department , Sheldon Block 2nd Floor, Birmingham, B18 7QH
Tel: 01215075273; Email: email@example.com
Isobel Whitwell – Chapel Allerton Hospital (Leeds), Rheumatology Research Nurses Office, 2nd Floor, Chapel Allerton Hospital, Chapeltown Road, Leeds, LS7 4SA Tel: 0113 3924729; Email: Isobel.firstname.lastname@example.org
Christine Routledge – Freeman Hospital (Newcastle), Freeman Hospital, Freeman Rd, High Heaton, Newcastle Upon Tyne, NE7 7DN Tel: 01912137753; Email: email@example.com
John Sindu – The Kellgren Centre for Rheumatology, Central Manchester University Hospitals NHS Foundation Trust, Manchester Royal Infirmary, Oxford Road, Manchester M13 9WL Tel: 0161 276 7925; Email: firstname.lastname@example.org
Diane Carlton, Bio Behçet’s/SATURN, Trial Coordinator, LCTU, University of Liverpool, 1st floor Block C, Waterhouse Building, 3 Brownlow Street, Liverpool, L69 3GL Tel: 0151 795 7323; Fax: 0151 794 8930
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.
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.
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!
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 email@example.com
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/
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!
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.
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
A full report of the 2018 AGM and Conference in Bristol is now available: 2018 AGM and Conference report.