Abstract
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:
Highlights
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
Looking back and comparing it to other small networks, I see that the way we did it, was good: 11q or as it is known the ‘European Chromosome 11 network’, is sometimes mentioned as an example how things can be done successfully at the European level
The network stands for a new issue: is it necessary to set new goals, especially for the ultra rare chromosomal disorders? How to deal with new ways of communication like social media, e-health and online consulting? Is it possible to stay alive as a small network? It is interesting, and a challenge once again
Summary
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. The impact of a small parental network: how 11q improved research, knowledge, contacts and support From 5th European Conference on Rare Diseases (ECRD 2010) Krakow, Poland. 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.
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