Become a BBS UK Friend

These unprecedented times, unfortunately, bring financial uncertainty and as a small but national charity,  providing support and information to over 1,000 people including patients, their families, carers and professionals, BBS UK are reaching out for help so that we can continue to offer free membership to everyone who needs it.

Whilst one-off donations, fundraising initiatives and the many other ways in which people show their support are all vital and are hugely appreciated, like most charities, we also need people to become regular givers (or ‘Friends’ as we call them). This is because regular donations provide a reliable source of income that we can direct to where it is most needed, it also allows us to plan ahead more effectively, ensuring that we can continue to offer the best care and support for all those affected by BBS.

BBS UK currently has a small group of 35 ‘Friends’. These individuals very kindly donate on a monthly basis and for this we are immensely grateful. However, to sustain the Charity financially, there is an urgent need for us to increase our Friends income – if we don’t take action now the future of the Charity and the support we provide will sadly be in jeopardy. We have therefore set ourselves a target of reaching 100 Friends in 100 days! We really hope you can help us achieve this.

What support does BBS UK provide?

Your contribution, however small, makes a huge difference to the individuals and families we help and enables us to continue to sustain a high level of support. Examples of what we have achieved over the last 12 months includes:

  • Provision of newsletters and information booklets
  • Support for BBS research programmes including those looking at mental health and wellbeing, kidney function and sight loss
  • Organised subsidised events including the annual conference, activity and social events
  • Management of the contract with NHS England providing support and advocacy services to the specialised clinics
  • Support for families with accessing local authority support, benefits and housing applications and Education, Health and Care Plans
  • Support for newly diagnosed families with information and regular contact
  • Support for extremely vulnerable adult members during Covid-19
  • A Covid-19 Information Hub on the BBS UK website
  • Webinars to support members and their families during the pandemic
  • Provision of support, advice and information via our social media channels

What do BBS UK members say about us?

We are a lifeline to so many people and it is vital we can continue to offer this kind of support. Our members told us recently what the charity means to them; their words are testament to the impact we have and would like to continue to have in the future:

o   “Fantastic support in the early days of diagnosis!”

o   “The charity welcomed us in with open arms and it was the first time ever that we didn't feel alone or judged”.

o   “The warm supportive family network made me feel confident and accepting of living with BBS. It has also helped me develop many life skills. My life would not be as joyous without this charity”.

o   “We were warmly welcomed, and everyone involved with the charity could not have been more helpful. The conferences are brilliant, really informative but fun as well. BBS UK has shown us that we are not alone, the charity and everyone involved and associated treat you like extended family and without all of you we would be lost”.

o   “BBS UK helped me to not have to pay the extra bedroom tax and have my hours increased for my direct payments, I have always had great support from the BBS UK team”.

o   “The best thing we look forward to is the BBS Conference and the BBS Activity weekend. My children love it and it makes them feel very special. Thank you all so, so much and please continue what you are doing so every family can stay happy”.

100 Friends in 100 days - how you can help us reach our target!

To become a ‘Friend of BBS UK’, please complete the form included within our Friends leaflet which can be downloaded here: BBS UK Friends Leaflet

Send the completed form to Kevin Sales (Finance Officer) either by post to 1 Blackthorn Avenue, Southborough, Tunbridge Wells Kent, TN4 9YA or take a picture/scan the completed form and email to and remember there is no minimum, or maximum amount that you can donate each month.   If fifty ‘Friends’ completed a standing order for just £5 per month, the income of BBS UK would increase by £3,000 per year! That would make a big difference to a small charity!

Of course, you are free to start and stop the standing order at any time, as you remain in control. If you have any questions, please contact Christine Saxon on or 07753 163 045.