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After the birth of our daughter, Geertje Jongman, and being told about her very rare chromosomal disorder, my husband and I experienced what so many parents did: not knowing anything, feeling alone, with our world turned upside down. Many years later we decided to start a European network and thanks to immediate support of other parents, some researchers/scientists and the internet; we managed to build it up. I resigned some years ago, but it is still alive and kicking! The European Chromosome 11q Network was formally founded in 1997. Looking back and comparing it to other small networks, I see that the way we did it, was good:

The impact of a small parental network: how 11q improved research, knowledge, contacts and support