Rare Disease Day 2021 : EURORDIS Black Pearl Awards 2021
Rare Disease Day 2021 will be held on 28 February 2021 with a global digital campaign highlighting key stories from 6 continents, 6 portraits, 6 heroes, 6 lives. In the lead up to Rare Disease Day 2021, online events will be organised to raise the voice of rare disease patients in Europe, with two major events : the EURORDIS Black Pearl Award and the Rare 2030 Final Conference (see our Spotlight).
In 2021, the EURORDIS Black Pearl Award marks its 10th anniversary, rewarding exceptional contributions to shaping and building a better and more inclusive future for people living with a rare disease, took place fully online for the first time on 24 February 2021, and was also open to the general public. A number of the 2021 awardees were announced in the run up to 24 February 2021, with others announced on the night.
Among the distinguished awardees this year, the EURORDIS European Rare Disease Leadership Award 2021 recognises the leadership shown to the rare disease community by Dr. Enrique Terol (DG Santé, European Commission), Victoria Hedley (Newcastle University Institute of Translational and Clinical Research) and Dr. Birutė Tumienė (Vilnius University Hospital Santariskiu Clinics and Orphanet coordinator from Lithuania), in the development of the European Reference Networks and the contribution of a stronger European cooperation in the rare disease field.
Three EURORDIS Company Awards 2021 were discerned, recognising companies leading ground-breaking activities to advance rare disease research, develop technologies with significant positive impact on the community and build constructive collaborations with patients: Orchard Therapeutics, Epihunter and Takeda.
The EURORDIS Company Award 2021 for Innovation recognises Orchard Therapeutics for the development of an innovative therapy based on hematopoietic stem cell gene therapy for the treatment of early onset metachromatic leukodystrophy. The EURORDIS Company Award 2021 for Health Technology recognises Epihunter for the development of a digital solution providing clinicians and researchers with complete data improving care management of patients with absence epilepsy. The EURORDIS Company Award 2021 for Patient Engagement recognises Takeda’s innovative approach on real-world evidence to integrate patient insights into medicines' development.
The EURORDIS Member Award 2021 went to AKU Society to recognise their 17 years of advocacy and research in the rare disease field, with the outstanding project results of DevelopAKUre and Patient-Centric leadership.
The EURORDIS Scientific Award recognised Prof. Alain Hovnanian's positive impact on research in the field of rare skin diseases.The EURORDIS Policy Maker Award recognised the leadership of Kateřina Konečná in championing the rare disease cause in Europe.
Milan Macek Jr, coordinator of Orphanet Czechia, was awarded a Lifetime Achievement Award for his lifelong dedication to addressing the challenges faced by people living with rare diseases. He has tirelessly worked to further the rare disease cause within the EUCERD, the European Society of Human Genetics and the Cystic Fibrosis Network. He has been a key contributor to the Rare 2030 Foresight project, and the past editions of the European Conference on Rare Diseases, and a long-term supporter of EURORDIS.
The Volunteers Awards recognised the contributions of Ingunn Westerheim and Rebecca Tvedt Skarbeg to EURORDIS and the wider rare disease communities, including their involvement in the European Joint Programme, Rare Disease Day and Rare Disease Week.
The public were also invited to vote for four different awards this year: the Photo Award, the Visual & Audio Media Award, the Written Media Award, and the Young Patient Advocate Award. The EURORDIS Yount Patient Advocate award was presented to Rachele Somaschini in recognition of her achievements in raising awareness of Cystic Fibrosis, including her fundraising of over €200k for the Italian Cystic Fibrosis Research Foundation (Fondazione Ricerca Fibrosi Cistica) through the #CorrerePerUnRespiro
The EURORDIS Visual and Audio Media Award went to Noémie Desquiotz-Sunnen in recognition of her outstanding achievements as a musician, and her organisation of charity concerts and her song ‘Never Give Up’ encouraging to people living with a rare disease to keep on fighting. The EURORDIS Written Media Award recognises Ana Ilić and her poetry that raises awareness of the realities experienced by the rare disease community.
The EURORDIS Photo Award 1st Prize went to Pavol Kulkovský for "Together Forever", with 2nd Prize to Khim Bahadur Lamichhane for "O.I Can", and 3rd place to Díana Júlíusdóttir for "Living with a Rare Disease".
The event was a joyous occasion, a unique moment, even at distance, to celebrate the community's achievements and to pay tribute to the individuals who tirelessly work for this cause.
