Administrateurs

Syndrome Angelman France

  • Odile PIQUEREZ – Présidente
    •  Aidante Familiale

  • Anne CHATEAU – Vice présidente
    • Enseignante retraitée

  • Dominique GAULIER
    • Orthophoniste

  • Michel PELLETIER
    • Hépato-Gastro-Entérologue

  • Jean-Charles MOUTHON
    • Directeur d’Etablissements Médico-Social

  • Jean Vincent PIQUEREZ – Secrétaire et trésorier
    • Président d’une association gestionnaire d’établissements

 

Commentaires

Dear Secretary, Syndrome Angelman France

As an organisation dedicated to improving the lives of people with Angelman Syndrome and their families, we would like to invite you to join us in helping to raise awareness of the Global Angelman Syndrome Registry.

The main purpose of the Global Angelman Syndrome Registry is to collect information about the natural history of children and adults with Angelman Syndrome. The registry is expected to benefit the Angelman Syndrome community in several ways:

•Enabling researchers conducting clinical treatment trials into Angelman Syndrome to recruit participants more easily;
•Improving understanding of the natural history and impact of Angelman Syndrome across the lifespan;
•Focus further research into the study of this condition; and
•Inform future service planning for people with Angelman Syndrome and their families.

The registry has been granted ethical approval from the Mater Health Services Human Research Ethics Committee (HREC/13/MHS/76). All reasonable steps are taken by the research team to protect personal information and data against security breaches or loss in accordance with the Australian Federal Privacy Act.

We hope that you will assist us in sharing the registry in the Angelman Syndrome community.

Yours sincerely,

Megan Tones
Data Curator
Global Angelman Syndrome Patient Registry

Laissez une réponse

Votre adresse mail ne sera pas publier.Les champs obligatoires sont marqués *