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When a rare disease invades your life, whether you yourself have the syndrome or are the parent of a child suffering from it, the world falls apart under your feet. You have to relearn everything, adapt everything, make it work....
Living with a rare disease like Bardet-Biedl Syndrome can sometimes be incredibly overwhelming and isolating, but it is important to remember that whether you are living with the syndrome yourself or caring for someone with it, you are not alone.
On this page you can find a list of all the countries where there is a Bardet-Biedl group, or other Bardet-Biedl patient support group.
Discover the website, social media page or e-mail address of your national Bardet-Biedl patient support group.
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