On February 20, 2024, the EspeRare Foundation and Pierre Fabre Laboratories received a prestigious EURORDIS Company Award for Patient Engagement. It was an extraordinary evening marking a significant milestone in our journey and an enriching collaboration with patient groups.
We feel immensely honored to be recognized for the remarkable efforts we make with and for those living with a rare disease. It truly exemplifies the spirit of collaboration and perseverance that defines the rare disease community. Working hand-in-hand with the Ectodermal Dysplasias representatives we learned how to better communicate with the families, understand their needs, preferences and challenges. We were able to echo the patient voice into our clinical study making it truly patient-centric, inclusive, trustworthy and accessible to families that consider participating. We are hopeful that our groundbreaking prenatal treatment aiming to correct symptoms of X-Linked Hypohidrotic Ectodermal Dysplasia (XLHED), a rare genetic disease, will truly address their needs and become accessible to patients.
This remarkable evening, filled with emotions and amazing people, reinforces our hope and inspiration to continue to strive for excellence, innovation and pushing the boundaries of responsible drug development for the rare disease community.
The awards ceremony serves to acknowledge the dedication and innovation demonstrated by individuals and organizations committed to advancing the cause of rare diseases. From patient advocates to policymakers, scientists to companies, the event shines a spotlight on those who tirelessly work towards improving the lives of those affected by rare diseases.
To find out more on the Black Pearl Award please follow the link: Black Pearl Awards Homepage - EURORDIS
