CREAF 22 - Overview
Introduction to the Association
Le Collectif Regional pour les Enfants, les Adultes et leur Famille is an association set up to support children, adults and their families who are affected by the 22q11 Micro Deletion Syndrome, it is registered with the prefecture in Vaucluse, in the President’s residence, although it was originally founded in Isere.
It brings together families in the regions of Rhônes-Alpes, Auvergne, Midi Pyrénées, Aquitaine, Paca, Alsace, Lorraine, Champagne-Ardennes, Bourgogne, Ile de France, Bretagne and recently Nord-Pas de Calais.
This introduction is to show you that our association is not only regional in character but that its sincere wish is to support all families affected by Digeorge. It is, in fact, actively involved throughout most of the country.
Before putting this site on-line, Daniele Thomas, President of the Association, created a blog about Digeorge Syndrome which is still in operation.
This blog's mission was to inform the reader about medical and social issues, relating to Digeorge Syndrome, even those still under investigation. These include such issues as the granting of educational benefits and it is also to keep you informed of our actions in the various regions.
This goal remains a priority for the Association. We have also noticed that the articles the most read, even by professionals, are those which try to inform you in a more precise and complete way of these particular concerns.
The blog’s mission remains complementary to the CREAF web site by giving you up to date news which we find relevant to the management of the syndrome.
Recently, Nicolas Verhille, our representative in the Nord-Pas de Calais Region, created a Facebook page (creaf22/Facebook) which is open to everybody without limitation.
You will find in Article 1 of our rules that you can freely consult all the objectives of the Association.
This site also addresses the pressing demand of our subscribers to be able to exchange ideas through an online forum.
Please do not hesitate to use it. In doing so you will help us to understand the things that concern you and the type of information which is missing today to benefit our children and give them a better quality of life.
Creation date : 08/11/2008 - 06:50