Patient-based Registry

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 rare diseases) and University of Tübingen.

The poster displayed various project activities of Syngap Elternhilfe e. V. and highlighted the EURAS project, demonstrating their commitment to the rare disease community and to the inclusion of people with special needs.

Further information on the different projects, can be accessed via QR-codes.

A special thanks goes to Lorenz Kiwull from the EURAS partner PMU. Lorenz presented the poster with the title “Together we are strong – Progress through cooperation”, which was one of the top 11 out of 50 presentations.

Download the Poster

The patient organization Syngap Elternhilfe e. V. is grateful for the ongoing support as they continue their mission to contribute to the rare disease field. Stay tuned for further updates.

Lorenz at NAKSE 2023NAKSE 2023