Black Pearl Awardees 2022
EURORDIS has announced the first Black Pearl Awardees for the 2022 edition, to be held on 8 February 2022. The awardees so far include EwenLife for the Media Award, Childhood Cancer International Europe (CCI-E) for the Members Award, Dr. William Gahl for the Lifetime Achievement Award, Graham Slater for the Volunteer Award, the European Alliance for Newborn Screening in SMA for the Company Award for Patient Engagement, Aparito for the Company Award for Health Technology, as well as Lysogene for the Company Award for Innovation.
Dr. Gahl played a key role in the creation and the development of the Undiagnosed Diseases Network (UDN) within the National Institutes of Health, a programme that has helped discover many new genetic disorders. This award recognises his leadership and his support of the rare and undiagnosed disease cause. It also recognises the discoveries made by Dr. Gahl’s lab of the genetic bases of gray platelet syndrome, Hartnup disease, arterial calcification due to deficiency of CD73, 3-methylglutaconic aciduria type III, 3 types of HPS, and neutropenia due to VPS45 deficiency.
The Volunteer Award is attributed to Graham Slater to recognise the outstanding contributions and dedication he has shown as a EURORDIS volunteer over the years. Slater has worked with TOFS, the Esophageal Atresia Global Support Group (EAT), European Reference Network for rare Inherited and Congenital (digestive and gastrointestinal) Anomalies (ERN ERNICA) and different EURORDIS working groups. The award also recognises Slater's long commitment to international collaboration in the rare disease domain and his leadership in ensuring equal access to treatment for all rare disease patients.
The new Black Pearl Award category for Social Media is now open to public vote and includes three finalists. Voting for the Photo Award contest is also open, and voters can choose between 7 finalists selected by National Geographic photographer Marcus Bleasdale.
The winners of these categories will be announced at the live EURORDIS Black Pearl Awards Ceremony taking place online on 8 February 2022. This annual awards ceremony launches the month of Rare Disease Day, taking place on 28 February 2022 to raise awareness for rare diseases worldwide. The event aims at bringing together persons living with a rare disease, patient advocates, policy makers, scientists, healthcare professionals and industry representatives to celebrate those who are making a real difference for the rare disease community.
Register now for free for the Black Pearl Awards online ceremony.
Photo credit : Eurordis
