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We are families with CdLS
All of us embarked on a mission after getting the diagnosis of CdLS for our child or brother or sister. We all have found some solution that could work for others as well. We share this knowledge and get together to share our emotions, our troubles but also our victories.
Energized by our children
To see the smile of CdLS Children is priceless. Families invest a great amount of energy to get the best quality of life. A lot will be consumed by the daily, lifelong care. But we have energy left over to get out and enjoy meeting with each other. Feeling part of this warm community is worth more than a 1000 words.
Supported by worldwide experts
To become an expert you need a good education. But you also need to meet people with CdLS. You need to have a certain amount of these encounters to learn about the specifics of a rare disease like CdlS. These experts are as rare as our children.
The CdLS World federation has brought together the experts world wide already in 9 conferences over 20 years. To meet these experts will be great for our families. But also to meet us will be a great experience for these experts to discover more about the syndrome.
