Syngap Global Network

Act Locally

Connect Globally

Who are we?

Syngap Global Network is a collaboration between organisations and parents representing the Syngap community in their country.

We have come together to drive the global unification of Syngap1-related efforts and initiatives.

Our Mission

Our mission is to coordinate our efforts globally, in turn creating strong local communities for our families. As a result, Syngap families will feel less isolated, having the resources they need to help their children the best they can.

With growing number of more than 1339 diagnosed patients in the world it is critical that we coordinate our efforts and spread awareness.

Our Goals

Global visibility

Provide a central place with information on each country’s efforts related to Syngap1-Awareness, research and key contact information

Educate and create awareness

Coordinate our education and awareness efforts at the global level

Accelerate new patient diagnosis

Brainstorm best ways to increase diagnosis rate in each country

Create a strong patient registry

Push for data collection

Break language and culture barriers

Facilitate communication between Syngap1 Advocates around the world

What we are not​

Syngap Global Network is not an organisation or foundation. It is a pure and simple collaboration.

Syngap Global Network will not raise money for Syngap1-related causes, since we are not a legal entity. If you wish to donate please reach out to the main contact in your country.

To find information in your country please visit the International Orgs tab.

How many people have SYNGAP1?

Every quarter SynGAP Research Fund (SRF) and partner organisations in the Syngap Global Network (SGN) tally up the newly diagnosed patients in our respective regions and come up with a global count. Today, the count stands at 1339 patients

Number of identified Syngapians
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International Syngap1 Day

International Syngap1 Awareness day 2022
Awareness day is not a single day… it is an everyday task that we will continue until a treatment or a cure is found.
We’ve compiled a video of more than 150 syngap1 kids and adults that participated in 2022 edition and we hope you will take as much pleasure watching it as we took compiling it.