Dear chromosome 6 parents,
We would like to thank all the parents who filled out a short survey about the C6 project participation. We really appreciate your help and have learned a lot about how to improve your experience from your answers. To quickly review, we sent out two separate surveys: one for parents who were not yet participating in the C6 project and one for parents who had started to fill out the questionnaire but had not completed it. In both cases we were interested in the barriers and difficulties that you are experiencing and on how we can help overcome these issues.
Continue reading FB update – March 2018
Dear Chromosome 6 parents,
My name is Berber Dantuma and I am a third-year Dutch medical student at the University of Groningen (the Netherlands). I am participating in an honour’s programme called the junior scientific masterclass, which enables students to work on research projects. I became enthusiastic when I attended a lecture by Conny van Ravenswaaij about the Chromosome 6 project and how it is driven by an active group of parents supporting each other through social media. This project has revealed a new way for parents-of-patient engagement in scientific research projects. I really think that parents filling out the medical questionnaires themselves is unique and a very good way to engage them in research that generates more knowledge on the rare chromosome 6 disorders. Parents are more motivated and know their own child the best.
Continue reading FB update December 2017
What do you do if your child has a disease or disorder that only a few children in the world have? Which doctors know so little about? Then you want ‘science’ to find more information as soon as possible!
Conny van Ravenswaaij is a scientist and medical doctor in the UMCG (in the Netherlands) and an international expert on children with a chromosome 6 disorder. Parents of children who have a chromosome 6 disorder live all over the world and exchange their experiences via their own Facebook page. A few years ago they decided to collect money for the research that Conny and her colleagues are doing. It was the start of a long-term research project: the Chromosome 6 Project.
Continue reading Chromosome 6 afternoon Orlando, USA 2017