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About Famiglie GNAO1 - GNAO1

Famiglie GNAO1

Famiglie GNAO1 Association was established in 2019 by a group of families in Italy to better support other families in Italy afflicted by the GNAO1 disorder.

About us

Whilst focused on serving the patient community within Italy, we aim to collaborate with patient family groups, physicians and researchers in other countries to facilitate information sharing and ultimately to find a cure for this rare disease.

Association

Mission

Famiglie GNAO1 association was born in June 2019 on the spontaneous initiative of a group of Italian families united by the direct experience of a family member affected by the de novo mutation of the GNAO1 gene. The Board of Directors currently consists of 7 members, and avails itself of the advice of an Advisory Board made up of clinicians and researchers with more experience on this pathology.

Organization

The association aims to provide support to GNAO1 families and to facilitate moments of sharing between them. It also aims to inform and raise awareness of this very rare genetic disease, organizing conferences and events. Lastly, through fundraising activities, the association aims to support scientific research projects that can shed light on the mechanisms underlying the disease and identify an effective therapy.

Statute

We believe in transparency, so we are happy to share with you the Statute of our Association, which can be downloaded at the following link: Statuto Famiglie GNAO1 APS

GNAO1 IN ITALY

GNAO1 IN ITALY

This map shows the location of the GNAO1 families currently in contact with Famiglie GNAO1. If you are a family with a recent GNAO1 mutation diagnosis, know that you are not alone. The families in this group are ready to give support and to share experiences and information. If you want to get in touch with us, you may do so via the contact form below.

Find out more