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Open Access 01-10-2010 | Oral presentation

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

Author: Annet van Betuw

Published in: Orphanet Journal of Rare Diseases | Special Issue 1/2010

Excerpt

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! …

Title: The impact of a small parental network: how 11q improved research, knowledge, contacts and support
Author: Annet van Betuw
Publication date: 01-10-2010
Publisher: BioMed Central
Published in: Orphanet Journal of Rare Diseases / Issue Special Issue 1/2010
Electronic ISSN: 1750-1172
DOI: https://doi.org/10.1186/1750-1172-5-S1-O8

At a glance: The STEP trials

Springer Medicine

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

Excerpt

At a glance: The STEP trials

Springer Medicine

Excerpt

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