Black Pearl Awards – Awardees
EURORDIS – Rare Diseases Europe wishes to recognise the major achievements and outstanding commitment of patient advocates, patient organisations, policymakers, scientists, companies, and members of the media who strive to make a difference for the rare disease community.
We would like to thank everyone for the hundreds of quality nominations we receive! Although we would love to be able to award all of the stars of the community, we must limit the number of awardees each year to 11 categories, appointed by the EURORDIS Board of Directors.
You can discover more about all of the incredible 2025 EURORDIS Black Pearl Awardees below.
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The EURORDIS Company Award for Health Technology recognises companies developing technologies with significant positive impact on the daily lives of people living with a rare disease. We commend Epihunter for creating an affordable and accessible digital solution that helps people with absence epilepsy to live more confident, fuller lives. We are encouraged by the strength of the technology to empower people to manage their condition better and have meaningful interactions with those around them. Epihunter’s innovative approach also contributes to raising much-needed awareness on a silent and invisible condition that is all too often misunderstood. It is testament to the potential of technology to help people living with rare and complex diseases overcome feelings of isolation. Through detecting, signaling and recording absence seizures, Epihunter’s device provides clinicians and researchers complete and accurate data, which is key for improving care and advancing knowledge of absence epilepsy.
The EURORDIS Company Award for Innovation recognises companies undertaking groundbreaking activities to advance rare disease research and treatment development. EURORDIS would like to acknowledge Orchard Therapeutics’ commitment to addressing areas of great unmet need for patients and the rare disease community through the development of one-time, potentially curative treatments. We commend the company for their leadership in harnessing the potential of hematopoietic stem cell gene therapy to change the course of severe inherited disorders. This Award particularly recognises Orchard Therapeutics for developing and bringing to Europe gene therapy for early onset metachromatic leukodystrophy (MLD), which addresses the urgent need of young patients and their families to treat a disease for which no approved therapeutic option previously existed. EURORDIS also appreciates Orchard Therapeutics’ continued readiness to facilitate and advocate for early diagnosis in underserved disease areas.