Are you a member of Behçet’s UK?
Do you have some time to spare?
Would you like to help to support others affected by Behçet’s from the comfort of your home?
We are looking for volunteer leaders for our Facebook peer-to-peer support groups.
Our Facebook support groups are still fairly new and are mostly relatively quiet, however in light of current circumstances we expect the groups to grow over the coming months as online support will become increasingly important. We have a group for each region of the UK so that members can more easily find others affected by Behçet’s who are living close to them.
Volunteer group leaders would represent Behçet’s UK by starting positive discussions, encouraging supportive conversation within the groups and ensuring group rules are followed. You will be supported by Behçet’s UK admin team and trustees.
Ideally we are looking for 2-3 leaders per support group. You can choose to become a leader of more than one group if you wish.
If you are interested, or would like to know more, please email us at firstname.lastname@example.org with your full name and if your Facebook name is different, please tell us your Facebook name too. We ask that you are at least 18 years of age.
We understand that many of you will be struggling at the moment so we’ve compiled a list of just a few suggestions of things that might help to distract you, and keep you feeling as calm as possible during this difficult time.
Follow our latest guidance regarding the outbreak here
Today, February 29th, is Rare Disease Day. Rare diseases and conditions affect 300 million people worldwide.
Behçet’s (also known as Behçet’s Disease or Behçet’s Syndrome) is a chronic condition resulting from disturbances in the body’s immune system.
This Rare Disease Day help to spread awareness of Behçet’s by sharing our diagram of symptoms of this rare, complex and lifelong condition.
Different sizes of the diagram for Twitter, Instagram and Facebook are available to download here.
UPDATED 19/03/2020: CANCELLED Unfortunately due to the Coronavirus outbreak this event is cancelled but will be rescheduled when possible.
Another fundraising event has been planned for Aberdeen! Chloe is very kindly organising a Charity Quiz Night in aid of Behçet’s UK on Wednesday 1st April at The Ashvale Fish Restaurant in Aberdeen.
Tickets are £15 each and teams are of 4-6 people. As well as the quiz there will be a raffle, and a meal is included in the ticket price.
To book, contact Chloe whose number is in the poster below:
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 email@example.com 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 firstname.lastname@example.org
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.