Young Patient Advocate Award
For a young outstanding individual (30 years old or under) who is actively contributing to raise awareness of key issues to people living with a rare disease on a local, national or international level. The award recognises strong dedication and commitment to positively impact the community by educating a wider audience of decision makers, the public and/or the media.
2020 Awardee: Jana Popova
Jana Popova of Bulgaria was the recipient of the EURORDIS Black Pearl Awards Young Patient Advocate Award 2020.
Using her skills and expertise in media and digital communications, Jana has raised awareness of issues faced by the SMA community, as well as rare diseases as a whole.
Jana's advocacy work within the EAMDA Executive Committee, the EPF Youth Group and as a volunteer for the Bulgarian Association for Neuromuscular Diseases has been instrumental in encouraging cooperation between different European patient organisations for neuromuscular disorders. This award recognises her boundless commitment to amplifying the voice of patients with neuromuscular diseases and other young patients, showing that together, patient advocacy can have a huge impact.
Find out more about the EURORDIS Black Pearl Awards Young Patient Advocate Award.
2019 Awardee: Laëtitia Ouillade
For her exceptional advocacy work to raise awareness of the needs of people living with a rare disease among a wider audience. From giving talks and testimonies in school to Laëtitia’s involvement with AFM-Telethon, she has truly helped to inform the general public and raise awareness about SMA. Laëtitia’s dedication is reflected further in her TV and radio appearances, which have been instrumental in bringing awareness of the needs of people living with a rare disease to a wider audience. Her support and participation at the EURORDIS Summer School and the ECRD Vienna 2018 is another reflection of Laëtitia’s commitment to the rare disease community and EURORDIS believes she is a truly deserving recipient of this Award.
2018 Awardee: Sammy Basso
Sammy Basso, who was born in Schio, Italy in 1995, is a patient advocate dedicated to raising awareness about Hutchinson-Gilford progeria. Sammy is the eldest of approximately one hundred people in the world living with progeria, and currently studies natural sciences, focusing on biology.
Whilst only 9 years old, he helped to created his own advocacy group, l’Associazione Italiana Progeria Sammy Basso, which has been instrumental in informing the general public and promoting the need for, progeria research.
Together with Bologna’s Institute for Molecuar Genetics – National Research Council (IGM-CNR), l’Associazione Italiana Progeria Sammy Basso created the Italian Network for Laminopathies, a group of Clinical and Research Centers performing clinical and molecular diagnosis or biomedical research in the field of laminopathies. As the driving force behind his advocacy group, he has been unstoppable in fulfilling his dreams to explore the world despite the apparent limitations of his condition, shown in his Nat Geo People Documentary, Il viaggio di Sammy, which documented his trip to the USA along Route 66, and his book of the same name. Sammy plans to become a researcher and contribute actively to the study of progeria, for which he has already been instrumental in raising awareness.