For the first time since 2020, EURORDIS (Rare Diseases Europe) recently held its Black Pearl Awards ceremony in person, recognizing the exceptional work and accomplishments of those who make a difference in the rare disease community.
EURORDIS received 1,720 award nominations from 2,073 participants across 30 countries. They gave out 86 awards.
“The EURORDIS Black Pearl Awards are a tribute to the heroes of the rare disease community, who are dedicated to making a positive impact in the lives of patients and their families,” Yann Le Cam, Chief Executive Officer of EURORDIS said in a statement. “I would like to extend my warmest congratulations to all the awardees, who have demonstrated exceptional leadership, innovation and compassion.”
Global biotech company CSL Behring, which develops and manufactures rare disease medicines, was among the sponsors of the 21 February gala in Brussels, Belgium. The event drew more than 400 people from 34 countries. Terkel Andersen, past President of EURORDIS, received the EURORDIS Lifetime Achievement Award.
“Terkel led the Board of Directors with an immense consideration and conscientiousness for over 20 years,” EURORDIS President Avril Daly said. “Terkel was a very strong leader in a very quiet and dignified way. He still is a leader in this space, and he steered the ship of EURORDIS through calm and often choppier waters than you might imagine. And he did so always with the perspective of a person living with a rare disease and the perspectives of (others also) living with rare diseases.”
Additional awardees included:
●EURORDIS Members Award: Orphan Diseases of Ukraine
●EURORDIS Volunteer Award: Michela Onali
●EURORDIS Young Patient Advocate Award: Adrian Goretzki
●EURORDIS Scientific Award: Luisa-María Botella Cubells
●EURORDIS Leadership Award: Holm Graessner
EURORDIS is an international organization who advocates for rare disease policy and patient empowerment. They work with over 1,000 member organizations across Europe, spanning different countries, conditions and disciplines. The Black Pearl awards event is held each February in honor of Rare Disease Day.
This year’s event was also a fundraiser and raised thousands of Euros for rare disease advocacy. In addition to awards, attendees heard from EURORDIS leaders, sang a song together (really!), competed in trivia and witnessed inspirational performances from musical guests like Saxana Sapietová, a saxophone player who has cystic fibrosis.
“I don’t think it’s a disease, it’s my lifetime partner,” Sapietová said, of cystic fibrosis. “It’s been a big challenge to play the saxophone and to challenge my lungs and my body to be able to do this. The instrument actually helps me to process and to live with the disease.”