CETLOn 25th April, the GARDIAN registry was launched.
It is owned by the patient community and is designed to study patients with GD2 and GD3 in a systematic and standardized manner.
The aim is to provide evidence-based data for advancing disease management, designing safer treatments, and improving patient outcomes. GARDIAN will help us all to improve disease understanding, management, and support to families with GD2 and GD3.
As a medical professional you can support us and make the registry a success just by informing patients and caregivers about GARDIAN and letting them know how important it is for them to get involved, get registered, and strengthen their voice.
Information about GARDIAN is available at gardianregistry.org, where the link to register is also available for patients and caregivers, with just one click.
The languages available now are English, Spanish, Arabic, German, French, Japanese, and Chinese.
For more details, please visit the FAQ section : [>http://gardianregistry.org/project-...]
If you have additional questions, or you want to talk to us, please write to gardian gaucheralliance.org and we will answer as soon as possible.
Support GARDIAN and support the nGD community !
French contact
Nadia Belmatougnadia.belmatoug aphp.fr
Yann Nadjar yann.nadjar aphp.fr
Marc Berger mberger chu-clermontferrand.fr
