Shayna Korol, Author at Dravet Syndrome News

Nominations are now open for the worldwide 2022 Black Pearl Awards from Eurordis-Rare Diseases Europe. The 12 award categories recognize individual advocates, policy makers, researchers, organizations, and companies who work to make a difference for the global rare disease community. The deadline for nominations is Sept. 10 and they can be submitted from anywhere in the world. The winners, selected by Eurordis' board of directors in October, will receive their awards in an online ceremony on Feb. 8, 2022. The annual Black Pearl Awards ceremony, now in its 11th year, is held at the start of February to coincide with the month of Rare Disease Day. Eurordis is one of the organizers of the international campaign to raise awareness for Rare Disease Day, which is observed annually on the last day of February. "The black pearl symbolises those unique individuals, organisations, and companies who demonstrate an incredible combination of hard work and dedication in their daily lives," Eurordis says on its website. The award categories include the Lifetime Achievement Award, the Young Patient Advocate Award, the European Rare Disease Leadership Award, and the Policy Maker Award. The Scientific Award, the Eurordis Volunteer Awards, and the Eurordis Members Award also will each have a winner, as will the Media Award. New for 2022 is the Social Media Award. Other categories include the Company Award for Innovation, the Company Award for Patient Engagement, and the Company Award for Health Technology. The Lifetime Achievement Award will honor an individual who has demonstrated a lifelong commitment to rare disease advocacy. Candidates must have positively affected the rare disease community on a national, European, or international scale. For the Young Patient Advocate Award and the Social Media Award, several finalists will be chosen and the winners will be selected by a public vote. The Young Patient Advocate Award recognizes an individual age 30 or younger who raises awareness of issues faced by rare disease patients at a local, national, or international level. The Social Media Award, being introduced for nominations this year, will be presented to an individual or organization who creates relevant social media content advocating for people with rare diseases. This media award is dedicated to the best advocates on social media platforms such as Facebook, Twitter, Instagram, YouTube, and TikTok. The winner of the European Rare Disease Leadership Award will be recognized for engaging in effective rare disease advocacy in Europe. The Policy Maker Award, meanwhile, recognizes an individual whose work to implement policies has improved the lives of rare disease patients. All the candidates nominated for these awards will have championed for greater awareness of rare disease and advocated for policies to improve patients' lives. Eurordis is collaborating with Orphanet, a resource for rare disease information, to assess nominations for the Scientific Award. This award recognizes a researcher whose work has led to scientific breakthroughs and who raises awareness for rare disease communities. Up to two individuals who have made a significant contribution to the rare disease community on a voluntary basis will receive a Eurordis Volunteer Award. The Eurordis Members Award will honor a member organization that provides innovative patient support or advocacy. Of note, Eurordis is an alliance of 962 non-profit organizations from 73 countries that advocate for rare disease patients. Individuals or groups who create media pieces that raise awareness of rare disorders are eligible for the Media Award. It recognizes exceptional art, writing, journalism, photography, film, and mass media. Finally, for the company awards, Eurordis is partnering with MedTech Europe to evaluate the nominations for health technology. This award honors a company developing medical technologies — devices, apps, IT platforms, or diagnostic tools — that improve the lives of rare disease patients. The Company Award for Innovation will be given to a business using new methods to develop treatments for rare diseases. A pharmaceutical or biotech company that shows a long-term commitment to collaborating with rare disease patients — involving them in the clinical trial design process and in early stages of therapeutic development — will be honored with the Company Award for Patient Engagement. For more information on the Black Pearl Awards nomination process, please contact Eurordis events manager Martina Bergna at martina.bergna@eurordis.org.

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Author Archives: Shayna Korol

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