Snygap Elternhilfe e. V. meets ePaG ERN ITHACA
Verena Schmeder and Marcos Mengual Hinojosa from EURAS partner Syngap Elternhilfe e. V. met representatives of the ePAG (European Patient Advocacy Groups) ERN ITHACA (European Reference Network for...
Read more
Networking Meeting in Brussels for HORIZON Europe projects
On 14 March 2024, the European Health and Digital Executive Agency (HaDEA) invited members of several projects from the rare diseases field to Brussels. The goal was to stimulate potential cooperation...
Read more
Rare Diseases Run 2024
Throughout the week of Rare Disease Day, 34 members of the EURAS consortium laced up their shoes and ran for rare diseases. As part of the 3rd RARE DISEASES RUN, organized by Syngap Elternhilfe e. V....
Read more
WP2 meets ERN-ITHACA
On 29 January 2024, EURAS partners from Work Package 2, who are responsible for clinical activities, met with representatives from ERN-ITHACA (European Reference Network for Rare Malformation Syndro...
Read more
EURAS Consortium Meeting
EURAS started into the new year with a one-day online meeting to update each other on the progress being made and on next steps and challenges laying ahead. It was a great opportunity to discuss, exch...
Read more
EURAS at the German National Congress for Rare Diseases (NAKSE)
We are pleased to announce the recent participation of our partner Syngap Elternhilfe e. V. in the German National Congress for Rare Diseases (NAKSE) organized by ACHSE (Alliance for chronic and rar...
Read more
EURAS at the 2nd SYNGAP1 Scientific Congress
The Vice President of the German Syngap Elternhilfe e. V., Marcos Mengual Hinojosa, had the privilege to participate in the 2nd Hispanic Scientific Online Congress for Syngap1 organized by the Syngap...
Read more
EURAS Patient Board Inaugural Meeting
Patient involvement is crucial for the EURAS consortium and the EURAS project, which was initiated by Syngap Elternhilfe e. V. It enriches the researchers' work and ensures that patients' needs are me...
Read more
New Project “EURAS”
Advancing Treatments for Rare Neurodevelopmental RASopathies: Parents' Initiative for Affected Children Leads to New EU Research Project EURAS
The EURAS consortium brings together patients and resea...
Read more
EURAS Kick-off Meeting
EURAS Kick-off Meeting, 18 – 20 July 2023, Erlangen, Germany
From 18 – 20 July, EURAS held a very successful kick-off meeting in Erlangen, Germany. For the first time, EURAS partners met face-to-fac...
Read more