We support people with BBS to to understand their condition and thrive
Story
On the 26th April I took part in the 2.6 challenge as the London marathon and the big Birmingham 5k fun run is not going ahead and I thought what I could do to raise money for a charity which I thought to cut my hair for a charity that is very close to my heart which is Bardet Biedl Syndrome As you may or may not know that I have bbs from birth as bbs effects every part of my body but I don’t let bbs stop me from achieving my dreams and goals in life The other reason why I cut my hair for bbs as I wanted to give something back to a wonderful bbs friend who was my first bbs family support worker who have become a family friend to my family which is the beautiful Julie sales
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We support people diagnosed with BBS, their parents, carers, and siblings as well as professionals involved in all aspects of the care and support of people with BBS in the UK.
We are a user-led organisation, represented by adults with Bardet-Biedl Syndrome (BBS) and parents of children with BBS.