Are you a rare disease nurse? Genetic Alliance UK have been working with the Rare Disease Nurse Network to help set up a peer-to-peer support group for rare disease nurses and care coordinators. To help connect the rare disease nurse community, they invite nurses and care coordinators to take part in this short survey here: https://www.surveymonkey.co.uk/r/RareDiseaseNurseNetwork…
We have recently updated our range of charity merchandise with some high quality hard enamel pin badges, as well as some new photo greeting cards.
The badges are £2 each plus £1.50 postage and packing, although the postage cost can be combined with 5 other small items. Please refer to the order form for more details.
The greeting cards are available in a pack of 8 for £6 plus £1.50 postage and packing. They are blank inside so you can write your own message and they come with white envelopes. If you’d like to order more than one pack, or if you’d like to order one pack with other merchandise, please refer to the order form for details of total postage costs.
The “Happy Birthday” biscuits card is also available as a single card for £1 plus £1.50 postage and packing. The single card can be included in the offer of 6 small items with a combined postage of £1.50
Profits from the sales of all these items go straight into the Society’s funds.
For further details on all our new merchandise please head to this page or email email@example.com
If you’re coming to our AGM in Harrogate on October 19th and you already have a question in mind to ask our medical panel, you can send us a message beforehand to let us know. We can then pass your question on to the medical panel before the AGM to give them more time to prepare a detailed answer for you and to confer with other medical professionals who can’t be there on the day.
Please note you will still be able to ask any questions that arise on the day itself as well during the Q&A session.
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: firstname.lastname@example.org / 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: email@example.com
Helen Franland /Ayren Mediana – Aintree, Clinical Sciences Centre, Aintree University Hospital NHS FT, Lower Lane, Liverpool, L9 7AL Tel: 0151 529 5894; Email: firstname.lastname@example.org / email@example.com
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: firstname.lastname@example.org
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.email@example.com
Christine Routledge – Freeman Hospital (Newcastle), Freeman Hospital, Freeman Rd, High Heaton, Newcastle Upon Tyne, NE7 7DN Tel: 01912137753; Email: firstname.lastname@example.org
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: email@example.com
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 firstname.lastname@example.org
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!