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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

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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.

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From cake sales to sports events, you can pick a fundraiser that fits your style. Follow our easy guide to set up your JustGiving page and start gathering support today.

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A woman is looking at the camera and smiling

We’re also delighted to welcome Alis Stevens as the newest member of the BBS UK Advice Service team.

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A woman is looking at the camera and smiling. She is wearing a white top.

We’re thrilled to welcome Beatrice Adeogun to the BBS UK team as a new Advice Worker, joining our Advice Service alongside Manager Rebecca Perfect.

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A group of people are stood looking at the camera and smiling. There is a guide dog stood in front of them. There is a BBS UK banner to the side.

It’s #VolunteersWeek — and we’re sending a huge THANK YOU to every one of our amazing volunteers!

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🎉 We’re thrilled to share that BBS UK has been awarded a 3-year grant from BBC Children in Need! This vital funding will support our ongoing work with children and young people living with Bardet-Biedl syndrome (BBS) across the UK. BBS is a rare genetic condition, and because families are spread far and wide, our services are designed to reach every corner of the country—whether that’s through in-person visits, online support, virtual events, or local networks like our Ireland Regional Group. From the moment of diagnosis through every stage of life, we’re there to offer practical help, emotional support, and community connection. Thank you, BBC Children in Need, for believing in our mission and helping us make a real difference.

We’re thrilled to share that BBS UK has been awarded a 3-year grant from BBC Children in Need!

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Four women are stood side by side smiling at the camera. They are wearing white BBS UK t-shirts.

Your thoughts matter to us! Please take a few minutes to complete our conference 2025 evaluation form.

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Front page of the BBS UK delegate information pack for conference 2025

Delegate Information Packs now available for the BBS UK annual conference on Friday 25th to Sunday 27th April 2025.

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Meet our speakers, exhibitors and sponsors for the 32nd BBS UK Annual Conference!

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