Voting will close and the awardee announced on 24th February 2021 during the EURORDIS Black Pearl Awards Ceremony, starting at 17:00 CET.
Adrian Goretzki was born in 1992, a patient with an X-linked agammaglobulinemia, a primary immunodeficiency (PID). Between 2010 and 2018 Adrian was the leader of the Polish Association for Patients with Primary Immunodeficiencies ‘Immunoprotect’, and from 2014 to 2016 also a board member of International Patient Organization for Primary Immunodeficiencies (IPOPI). In 2014 he managed to secure a reimbursed home therapy for adults patients with PID in Poland.
Athanasios (“Thanos”) Pallidis was born in 1990 in Greece. He was diagnosed with Homozygous Familial Hypercholesterolemia (“HoFH”) at the age of four. HoFH is a rare, inherited condition, where a false gene causes dangerously high cholesterol. Soon after his diagnosis, Thanos was put on a combination of lipid lowering drugs, followed by an LDL apheresis, the only available and lifesaving treatment at the time. In 2013, a Greek FH patient association was founded.
Rachele was born in Milan, Italy, in 1994. Together with the joy of her life, she was diagnosis with Cystic Fibrosis, threatening the possibility to reach adulthood. Today, if you google Rachele Somaschini you get plenty of results regarding her career in motorsports: not only did she become National Rally Champion, but she is also known as a relentless advocate of the fundraising project #CorrerePerUnRespiro (which means "Racing for a breath").