EURORDIS Black Pearl Awards kick-off Rare Disease Day
Last week, to launch the month of Rare Disease Day, EURORDIS held, online, the annual Black Pearl Awards on 8th February 2022. Dr Ewa Kopacs, Vice-President of the EU Parliament, was Honorary Chairperson of the ceremony while Clément Beaune, Secretary of State for European Affairs of France, took part as Keynote Speaker.
During the ceremony, a tribute was made to David Maria Sassoli, President of the European Parliament who passed away early this year. The tribute recognised Sassoli’s leadership and dedication to cooperation and collaboration across countries, while being a strong supporter of the rare disease community and serving as Honorary Chairperson at last year’s ceremony.
The ceremony was also preceded by a number of round table discussions with awardees by theme. In addition to previously announced awardees, in the days before the ceremony a number of additional recipients were announced, including Prof. Hans-Georg Eichler for the Policy Marker Award, Prof. Franz Schaefer for the Scientific Award and Dr. Anne-Sophie Lapointe for the Leadership Award. The winners of the Young Patient Advocate Award, the new Black Pearl Award category for Social Media and the Photo Award were also announced during the online ceremony that took place on 8 February 2022. Milica and Noa won the Social Media Award for their social media profile on Instagram while Danielle Drachmann won the Young Patient Advocate Award for her contribution to the Rare 2030 Foresight Study and her advocacy for change for people living with a rare disease in Europe.
The Policy Maker Award is attributed to Prof. Eichler to recognise the role he played to make clinical research more innovative, notably in his role as Senior Medical Officer of the European Medicines Agency. This award also acknowledges his active engagement with the Clinical Trials Transformative Initiative (CTTI) and his commitment to making clinical research more global and bringing information to those who need it most. He will continue making an impact as a volunteer for EURORDIS.
Prof. Schaefer’s played a key role in the ERN Coordinators Group and in several of the cross-ERNs Working Groups, as well as a prominent role in rare disease Registries and the European Joint Programme on Rare Diseases. His scientific leadership and dedication to the rare disease community have allowed key achievements to be made in the field of rare kidney diseases, paediatric nephrology and hypertension. This Award recognises his scientific leadership, research and collaborative spirit.
The Leadership Award is attributed to Dr Lapointe to recognise her leadership and dedication and the positive impact she has made in advancing rare disease policy and partnerships both at a national and international level. Dr Lapointe started as patient advocate as a mother of a child with a rare disease, within the patient organisation Vaincre les Maladies Lysosmales (VML), and has since held positions at the Conseil National de l'Alliance Maladies Rares, at the Comité d'éthique de l'INSERM. She is currently leading policy building on rare diseases at the French Ministry of Health, where she is leading the French National Plan on Rare Diseases. Dr Lapointe gave an inspiring speech to participants at the awards on the beauty to be found in serving the rare disease community and the hope and courage to move forward it has given her over the years.
In preparation of Rare Disease Day 2022, this year’s official video has been launched. The video is available in 40 languages and launches the international campaign to shed light on people living with a rare disease. EURORDIS and partners are calling on people worldwide to share this video on their social media with the hashtag #RareDiseaseDay. A school toolkit has also been launched to help teachers and parents understand and explain rare diseases to children. The school toolkit includes a children’s book available in several languages, as well as a lesson plan introducing a basic understanding of living with a rare disease to children.
Several international events will take place to mark the 15th Rare Disease Day and raise awareness for rare diseases. On the 28 February 2022, the fourth high-level meeting of the NGO Committee for Rare Diseases will be held at the World Expo in Dubai. This meeting will be the opportunity to discuss key global intergovernmental commitments, such as the United Nations Political Declaration on Universal Health Coverage (UHC) and the recently adopted United Nations General Assembly Resolution on Addressing the Challenges of PLWRD and their families
Photo credit: EURORDIS
