Bardet-Biedl Syndrome and Laurence-Moon Syndrome are two uncommon disorders.  Each is inherited and each shows some similar features, which is why they have been confused as one disorder for years.  If you have a child with more than five fingers and/or toes at birth on the lateral side of the hand or foot and your doctor refers you to an ophthalmologist, please start asking questions: “What does that extra digit have to do with my child’s eyes?”  Monitor your child for a retinal disorder or for obesity that is difficult to manage despite dietary efforts, or for learning difficulties.

The future offers more questions.  Every age presents itself with more questions and problems that have to be digested by the parents, the children, but also siblings of the affected children, the family and friends.  The children are each unique individuals, but they have so much in common.  The experiences that we exchange are often the answers that we have been looking for, but were unable to get from the various doctors whom we consulted.

We want to join parents and children to talk about our experiences and to share our emotions.  Thus, we try to support each other as much as possible and to share information so we do not fixate on the disabilities, but allow us to see and to use all possibilities and thus to allow the children to live full, healthy, and independent lives.

A true umbrella of activities such as informal get-togethers, informative meetings, lectures, etc. offers you a chance to meet people like you.  Meetings afford you the opportunity to tell your story, where you can ask questions, voice your doubts and fears.  You will be welcomed by people who know what you are talking about!

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