Behçet’s UK are proud to support this year’s Rare Disease Day on 29th February 2020.
Head to the Rare Disease Day website at https://www.rarediseaseday.org/ to find out how you can get involved in spreading much needed awareness of rare diseases like Behçet’s.
Also head to the Rare Disease UK ‘Rare Reality’ website at https://rarereality.raredisease.org.uk/ to make your own “Rare Star”
Tickets are a bargain at only £5 and include a goody bag, complimentary drinks and personalised consultations. There will also be a charity raffle.
If you’re interested in attending drop us an email at firstname.lastname@example.org and we will pass your details on to Jodie.
Evolution Choir, based in Salisbury, have nominated Behçet’s UK as their ‘dedicated charity’, in recognition of and supportive to group member Cat who has Behçet’s and have already collected £332 from pre-Christmas gigs!
Founded in 2007 by Singing Teacher and Confidence Coach Lilli Badcock, the group has built a reputation over the years as a fun and supportive environment to build confidence, learn to sing and make new friends.
It is a non-audition group and every member is given the opportunity to sing a solo, but there is no pressure to do so. Evo offers the unique combination of professional training with a huge element of FUN! A huge part of why Evolution works so well is because it is run from pure passion and a love of performing. Cat loves singing with them.
The choir have recently auditioned for Britain’s Got Talent, and will know in February if they have ‘caught the judge’s eye’
Are you a child or young person aged 8-18 with Behçet’s? Your help is needed to contribute towards new information booklets about young people’s experiences of Behçet’s. They will help to educate schools and other children and young people about your illness and how it affects your daily life.
There will be a workshop including lots of fun art activities at Alder Hey Children’s Hospital on Monday 17th February 2020. All the details are in this flyer.
If you have any questions about the event, please contact email@example.com
Until the end of December if you’re in the UK and donate to us via PayPal’s Giving Fund page, PayPal will add on an extra 10% to your donation.
It works if you either donate to us here: paypal.com/fundraiser/112574636177901026/charity/124127 or through the PayPal app. So if you donate £20, this means we end up with a total of £22, plus Gift Aid as well if you are a UK taxpayer.
Thank you so much to all who regularly donate to help those affected by Behçet’s.
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 firstname.lastname@example.org 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: email@example.com 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.