After more than six years with BBS UK, we will soon be saying goodbye to Rebecca, our Advice Service Manager, as she moves on to a new position.

Rebecca joined BBS UK in 2019 and was instrumental in establishing and developing the Advice Service from its early stages into the valued source of support it is today. Drawing on many years of professional experience across social care, learning disabilities, autism and the charity sector, Rebecca brought both expertise and empathy to her role, helping countless individuals and families navigate often complex and challenging situations.

Throughout her time with BBS UK, Rebecca has been a consistent source of support, guidance and reassurance to the community. Her compassionate approach and commitment to ensuring people felt listened to and understood has had a lasting impact on many of the families we work alongside.

We know that many members of our community have developed strong relationships with Rebecca over the years. We want to reassure everyone that all Advice Service cases continue to be actively managed by the Advice Team and support remains in place.

Rebecca has also been a hugely valued colleague and friend within BBS UK. Her warmth, professionalism and dedication have helped shape not only the Advice Service, but the wider organisation and community around it.

Rebecca will be moving on to a role with Electric Umbrella, a charity doing inspiring work to create a more inclusive society for learning disabled and neurodivergent people through music and community.

While we will miss Rebecca enormously, we are incredibly grateful for everything she has contributed during her time with BBS UK. We wish her every success, happiness and fulfilment in this exciting next chapter.

BBS UK attended a Parliamentary Round Table on genetic obesity syndromes at the House of Commons.

Back in October, BBS UK joined many international BBS organisations and supporters to celebrate #BBSGlobalDay. In the lead up to the day, a video was created featuring people from around the world sharing their stories.

Five people are stood together smiling at the camera. Four of them are wearing BBS UK t-shirts.

Registration open for the BBS UK Annual General Meeting on Saturday 8th November 2025.

It’s BBS Global Day this Saturday!
Here at BBS UK, we’re excited to come together with the global BBS community to raise awareness, raise funds and support research into #BardetBiedlSyndrome.

We’re excited to launch BBS UK Challenge Events. This is your chance to take on a personal challenge while supporting families affected by Bardet Biedl syndrome. Whether you’re looking to run a marathon, walk a scenic route, brave a bungee jump, or take on a family-friendly inflatable course, there’s a challenge for every energy level. … Read more

Your donations, whatever the size, help us to continue to support people living with Bardet-Biedl syndrome and their families. Here are all the ways you can donate.