Valentin APAC association
Valentin Association of Carriers of Chromosomal Anomalies
Association which groups together and helps people confronted, directly or indirectly, with the various problems posed by anomalies in the structure or number of chromosomes (example: translocation, inversion, deletion, partial or complete trisomies, partial monosomies or complete, and others)
Contact information :
52, La Butte Eglantine
95610 ERAGNY SUR OISE
The Association Rare Disease Alliance
Created on February 24, 2000, the Alliance Rare Diseases (association law 1901) brings together today more than 200 patient associations. It represents nearly 2 million patients and around 2,000 rare diseases. It also welcomes isolated patients and families, "orphans" of associations.
Unique is a UK-based charity that works worldwide to inform, support and network all families affected by rare chromosomal disorders.
They were the first to create a guide to Koolen De Vries syndrome. We are currently working with them on the French translation of their latest version.
They also organized a seminar in Leeds from September 30 to October 2, 2016 where many families from the United Kingdom, the United States, Italy, Belgium, Spain and France met with conferences on the Koolen De Vries syndrome: genetic presentation of the syndrome by Doctor Koolen and his team, lectures on language and sleep disorders.
You can learn about all of their activities and goals through their social media platforms like their public Facebook page, Twitter and Instagram.
The AnDDI-Rares sector
KDVF is a member of the National Rare Diseases Health Network dedicated to diseases with abnormal somatic and cognitive development. This sector brings together all the French players involved in the diagnosis, monitoring, treatment, research and training of these diseases.
Coming from the National Rare Diseases Plan 2011-2014, it aims to lead and coordinate actions between the actors involved in the management of rare diseases, either close in their manifestations, their consequences or their management, or responsible for damage to the same organ or system.
Our association has been able to forge links with the referring physicians for Koolen de Vries syndrome at the CHU de Grenoble: translation of the Unique brochure, consultation with respect to the PNDS specific to Koolen de Vries syndrome or relay for future scientific studies.
We have forged very close ties with GenIDA (Genetics of Intellectual Disability and Autism Spectrum Disorders) which has created a website for patients, their families and professionals as part of a collaborative project.
For more information click on this link: https://www.koolendevriesfrance.org/etude-genida
Website : https://genida.unistra.fr/
GiS AUTISM and NEURODEVELOPMENTAL DISORDERS
This Scientific Interest Grouping is an interdisciplinary research group whose aim of coordinating and bringing together all the major players in the field of autism and TND to promote multidisciplinary projects, which also includes the many healthcare players (CRA, expert centres, rare disease reference centres, etc.) , in conjunction with the associations of the persons concerned and families.
They have, for example, covered the travel and accommodation costs of our medico-social workers during the 2021 Regrouping.
Website : no known website
our little stars
Based in Haute-Savoie, the non-profit association nos p'tites Etoiles, had the primary objective of giving visibility to the various associations working in favor of children in difficulty (illness, disability, bereavement, etc.) and to create synergies between them by linking them.
Today, it also organizes "air bubbles" days during which the child and his family can forget their daily lives and also collects funds for research into children's cancers.
In 2022, the Koolen De Vries France association is participating for the first time in the annual solidarity gathering organized by Nos P'tites Etoiles in Annecy-le-Vieux.