THE VOTING HAS NOW CLOSED!
The EURORDIS Social Media Award celebrates advocates and influencers whose innovative and impactful content amplifies the voices of the rare disease community, raising awareness of the unique joys and challenges faced by those living with rare diseases.
We were pleased to announce Yamina Hsaini as the 2025 EURORDIS Social Media Awardee during the live EURORDIS Black Pearl Awards ceremony on 24th February 2025.
Scroll down to learn more about Yamina and our 3 amazing Social Media Finalists!
EURORDIS Social Media Awardee 2025
Yamina Hsaini
Yamina Hsaini is a French content creator who has lived with gastroparesis, a rare condition affecting muscular contractions in the stomach, since 2014. Throughout her years-long odyssey for answers and treatment, Yamina has become a powerful voice on social media for her community. By creating informative nutritional vlogs, and through the unflinching honesty in her videos from hospital, Yamina has shone a spotlight on the physical, emotional and medical challenges of living with a rare gastric condition. She has shown us that having a rare illness can mean years of suffering before receiving a diagnosis. Yet, through her daily fight, she has demonstrated the scope for achievement within her community.
Our 2025 EURORDIS Social Media Award Finalists
Marta Cucurella Perdomo
Marta Cucurella Perdomo is a Spanish content creator and mother of three living with multiple rare diseases, including mobility-affecting syndromes such as Ehlers-Danlos syndrome, gastric conditions, and vascular compression syndromes like MCAS, POTS and Tethered Cord Syndrome. Marta uses mobility aids and a gastric jejeunal feeding tube in her everyday life. Currently undergoing palliative treatment, Marta’s journey is a true testament to resilience and strength. She has harnessed the power of social media to share her personal stories, and her live Instagram interviews have fostered a supportive community where others feel encouraged to voice their own experiences. In 2022, she received the “Ellas Cuentan” award for her work which assisted her in building new support networks in Spain, one of which helped to create Spain’s first vascular compression syndromes association, AESCOV. Marta’s inspirational voice in raising awareness of rare diseases highlights the vital importance of connection and feeling less alone
Clara Ziegler
Clara Ziegler is a German content creator who was born with the rare skin disease Epidermolysis Bullosa (EB). She has embraced the power of social media to share the full reality of life with her rare condition and amplify the voice of the EB community. Through a variety of creative content, from ‘Day in the Life’ videos to the stories and testimonies she shares in her online blog, Clara spotlights the diverse experiences of people living with a rare condition. This courageously unfiltered approach and unwavering commitment to fostering understanding is what broadens the reach of her content.
Wojtek Sawicki
Wojtek Sawicki is a Polish content creator and disability rights activist who was born with Duchenne muscular dystrophy. Throughout his social media content, Wojtek demonstrates an unwavering commitment to sharing the full reality of life with a rare condition and disability. His contributions to national performances and campaigns, and his advocacy for equality and access in the arts, further showcase how Wojtek has become an influential voice both for the muscular dystrophy community and across the Polish arts scene. Despite his progressive illness, he graduated from the Philosophy Department of Gdańsk University and has collaborated with major brands and NGOs in the fight for representation and inclusivity. His impact and body of work underscore his standing as such a prominent disability-focused content creator in Poland.