Named after a rare gem, the Black Pearl Awards recognize precious commodities of another sort: the patient advocates who try to bring more attention to rare diseases.
Every year since 2012, the European Organization for Rare Diseases (EURORDIS) has celebrated the work of advocates at a gala, black tie ceremony. CSL Behring, a supporter since the Black Pearl Awards launched, was joined this year by CSL Vifor in sponsoring the event in Brussels, Belgium, on February 20. Both are business units of CSL and make medicines that treat rare diseases.
The awards celebrate hard work, innovative thinking and dedication to the rare disease community, according to EURORDIS.
Among this year’s awardees, some work in media, creating documentaries to spread awareness. Others perform scientific research, and still others design technologies to help patients in their day-to-day lives. All face a challenging climate for rare disease awareness. Many don’t know much about rare conditions or the harm they can do.
EURORDIS recognizes patient advocates in 16 areas, including patient engagement, health technology, scientific research and photography. Here’s a look at this year’s recipients:
Silvia Aguilera, winner of the Volunteer Award, is vice president of the Spanish association representing patients who have Antiphospholipid Syndrome, an autoimmune disease in which antibodies attack phospholipids. Phospholipids are key components of cell membranes, protecting the cell from invaders and helping with cellular processes.
Debra International, which advocates for those with epidermolysis bullosa, received the Members Award. In operation for the past 50 years, Debra International has established representative groups the world over. Over the past couple of years, with war in Ukraine and an earthquake in Turkey and Syria, Debra mobilized support for patients in these crisis zones. Efforts included aid provided along the Polish-Ukraine border for 120 Ukrainian citizens who have severe epidermolysis bullosa.
Dr José-Alain Sahel of the University of Pittsburgh School of Medicine received the Scientific Award for his contributions to the study of retinal diseases, especially inherited retinal degenerations. An author or coauthor of 500 studies, Sahel is an expert in retinitis pigmentosa, an umbrella term for a group of mostly inherited retinal diseases that lead to blindness.
Sahel and his team recently identified a genetic factor responsible for keeping alive photoreceptors called cones, which are essential to the process of seeing. Sahel chairs Pittsburgh’s department of Ophthalmology and is the endowed chair of the Eye and Ear Foundation, University of Pittsburgh School of Medicine, as well as an adjunct professor of Robotics and Bioengineering at Carnegie Mellon University.
This year’s photography award went to “Together Strong,” submitted by Marianne Bal and photographed by Melanie Fabi. The photo shows Valentin, a rare disease patient in Austria who has Pelizaeus-Merzbacher Disease, hugging a canine friend.
See the full list of this year’s winners.
“My deepest thanks go to each of them for their lasting contributions, and may their work inspire a growing movement dedicated to our cause in the years ahead,” Yann Le Cam, Chief Executive Officer, EURORDIS-Rare Diseases Europe, said in a statement.
