The Northern Ireland Rare Disease Partnership has a couple of upcoming events which may be of interest to those of you in the area affected by Behçet’s.
Their AGM & Winter Meeting is happening tomorrow 6th December from 2-4pm in Belfast. Unfortunately registration has officially closed but there could be last minute tickets available so it would be worth contacting them if you’d like to attend. Click here for more information.
There will also be a ‘Living with a Rare Disease’ information event on Monday 9th December from 10am-2pm in Newtownards. More details are available here.
Like many charities, we rely solely on fundraising from our members and the general public to maintain our services and we don’t receive any government funding.
We know it’s an expensive time for many in the run-up to Christmas but the good news is we have many ways for you to support us that won’t cost you any extra pennies! Check them out below.
So, before you checkout your Black Friday deals, check out if you can make it a Behcet’s UK Friday this year too!
Fundraise while you shop at Amazon
Choose Behcet’s UK as your charity on AmazonSmile and donate 0.5% of the net purchase on all eligible items at no cost to you!
All orders must be placed at smile.amazon.co.uk – we don’t receive any donations from on orders placed on Amazon.co.uk.
Android users can also order through the Amazon Shopping app. Instructions can be found here. Unfortunately it is currently not possible to order on AmazonSmile if you are an iOS user.
Good news for those who may forget – there are browser extensions available which will automatically re-route you. Smilematic provide a free add-on for Google Chrome, Firefox and Safari to ensure all your Amazon orders go through AmazonSmile.
Please use a browser whenever possible as sadly there is no AmazonSmile Mobile App.
We’d love it if you could spread the word to all your friends and family. Add one of these extensions to your browser or save the link for AmazonSmile on your laptops, PCs, tablets, and phones – every penny counts!
Fundraise while you shop elsewhere!
We are registered with several shopping websites that you can use to shop through and fundraise for us at the same time at no extra cost to you! They work by having links with big brands and when you make purchases through them, they generate commission which is turned into donations for charities like us. Many thanks to those of you who have signed up already!
For the person who has everything or needs a clearout!
Facebook birthday fundraising is an easy way to ask your Facebook friends to donate to your chosen charity as an alternative gift. Already we have had several people kindly choose us as their charity of choice on their birthday this year. Thank you to all our fantastic fundraisers!
Are you having a clearout over Christmas? Sell your items on eBay and you can choose to donate a portion of your sales to us! If you donate as little as 10% of your auction outcome to Behçet’s UK, eBay will refund your selling fees!
Fundraising isn’t just for Christmas!
Don’t forget to shop this way all year round!
Find out all the ways you can fundraise for us here on our website and if you need any help please contact Gemma or Deborah by emailing email@example.com or calling 0345 130 7328.
Why not buy some Behçet’s UK merchandise to spread awareness of Behçet’s and help us to raise funds?
We have Behçet’s UK pens, keyrings, badges and packs of greeting cards available.
If you’d like to order some in time for Christmas, the last dates are as follows:
- If you’re paying by cheque, post your order to us by Monday 25th November
- If you’re paying by BACS or PayPal, email us your order by Friday 13th December
For more details on how to order head to this page.
COordiNated Care Of Rare Diseases (CONCORD)
The CONCORD research team would like to find a few more people to take part in the virtual focus group on the 18th November 11-2pm. The group will be discussing the types of care coordination that patients/parents and carers receive and their preferences on types of care coordination, and different aspects of care coordination. It should be a really interesting discussion. All participants will need is a computer with an internet signal. We are looking for patients (18+) and parents or carers of children or adults to take part. If you know of anyone who may be interested, please ask them to email: firstname.lastname@example.org or call Holly on 02031083068.
There’s more information about the CONCORD study here on the Genetic Alliance website.
Our fantastic Christmas Cards designed and made by Jan Mather and her mother have once again sold out lightning fast! Thank you very much to those who have ordered some or bought them at our AGM, and our apologies if you missed out this time.
You can still support Behçet’s UK this Christmas by ordering some of our merchandise as Christmas presents.
Behçet’s UK 2019 Annual Report and Accounts are now available to read online here
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.