Yesterday, we had the pleasure of welcoming Sandra Silva-Arrieta from GRIN EUROPE to the Asphalion offices!
In her talk “Advocating for Hope: Parents’ Perspectives on Rare Disease Research to Finding Treatments and Cure”, Sandra shared the inspiring story behind GRIN Europe, a parent-driven association that began in 2018 when eight founding members came together at the first European GRIN2B Conference in Barcelona. What started as a search for answers and community has grown into a powerful movement advocating for families affected by GRIN-related disorders across Europe. GRIN Europe now supports families facing various GRIN mutations (GRIN1, GRIN2A, GRIN2B, GRIN2D), connecting them with researchers, clinicians, and each other to foster knowledge, collaboration, and hope.
This visit offered a unique opportunity for the Asphalion Team to hear directly from a parent involved in European research projects on rare diseases, gaining valuable insights into the challenges and hopes of GRIN families.
For more information about GRIN Europe and their impactful work, please visit: https://www.grineurope.org
