Dutch Triple X syndrome Website/Support group
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| How it all started Thea van de Velde and I became in contact in 2004 after we both had asked some questions on a Dutch website which is related to rare genetic disorders. ( FVO-forum) We started email contact, we both have a daughter with Triple x about the same age, and we wanted to exchange our experiences. |
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| A lack of information We also concluded that there wasn’t a lot of information to be found, especially in the Dutch language, so we started our own research. We translated a lot of articles we found on the Internet in Dutch, wrote a life story of our daughters and published it together with their picture on a website we created in June 2004. We founded a (Parent) Support Group at the same time and so we gathered more life stories for our website over the years. |
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| First Article in Dutch We made contacts in the medical area and were very pleased that the best professor in Holland (Prof. C.Stumpel) who specialised herself in chromosome disorders/syndromes made the effort to write an article, together with a psychologist (Prof. L.Curfs) and a psychiatrist (Drs. M.Otter), which we published on our website in June 2005. The same article was published in “Patient Care”, a magazine for doctors (and doctors in training) and in a book “ Klinische Genetica” (Clinical Genetics), also available for general practitioners. We linked our website on several (medical) search engines on the web so within a few months “the whole world” was able to find us. |
| Support meetings In 2005 we had our first (parent)support meeting which we choose to spend in an amusement park somewhere central in our country. Our second meeting took place in June 2007 in an open air museum and the 3th was held In Bennekom. On that day we had a few guestspeakers invited. Because we have a lot of Belgium members we created the possibility to attend a meeting day in their own country which was held in august 2007. The second day was held in June 2008 and a 3th was held in Leuven 2009, also with guestspeakers present. On september 1, 2012 our 5th Dutch Family Meeting will be held. Public relations About 7 years ago Thea did two readings together with Drs. M.Otter (author of the Dutch article) for a group of colleague psychiatrists and a group of doctors who work with mentally handicapped persons. They presented the info of Triple x syndrome and why there is a need for scientific research. In May 2007 we created a leaflet in Dutch because there wasn't one and translations in English, French and German are also available on this website. Since 2008 there's also a Spanish version of the leaflet and in 2011 the Danish version followed. We gained more information in several languages and presented it in separate sections. Our goal for the future is to set up some sort of research in Holland with great help from Drs.Maarten Otter (psychiatrist, who did a large study in collecting all articles ever written about Triple X), professor Stumpel (Clinical Genetics) and professor Curfs (Psychology). In 0ctober 2009 Sophie van Rijn, PHd Leiden University, started a study including XXX girls in the age 8-12 years old: "Factors at risk in development of social skills within children (Cognition and Behavior)". KS&A is supporting this study. In 2009 and in 2012 the following articles were published by Drs Maarten Otter, Prof. C. Stumpel and Prof. L. Curfs: |
| Yahoo Groups In August 2006/Januari 2007 we also started 2 Dutch Yahoo-Groups; One for parents and XXX women and the second especially for XXX women who want to talk about mature or serious ‘problems’. 6 years ago Thea did an interview for ‘Margriet’, a weekly woman magazine, which was published in February 2007. We have had emailcontact with Lennie Wilson and many others in the USA who are in some way related to XXX. It’s needless to say we’re very proud of what we accomplished over the last 8 years. We will go on with our work getting the attention Triple-X girls and women deserve and need. It’s a long way but we’re getting there. August 2012 Thea van de Velde en Ida Bakker Dutch Triple X Support Group p/a Langsteek 15 5641 NG Eindhoven, The Netherlands Phone +31 402810261 *** |