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February 2017

Stars of rare disease community recognised at EURORDIS Awards Ceremony


Winners of the EURORDIS Awards 2017

The winners of the EURORDIS Awards 2017 were announced at a ceremony in Brussels on Tuesday evening.

The EURORDIS Awards & Black Pearl Evening is held to mark the occasion of Rare Disease Day 2017.

Vytenis Andriukaitis, European Commissioner for Health and Food Safety, presented the EURORDIS Awards to this year’s winners:


See full details of the winners and their commitment to the rare disease community in the EURORDIS Awards press release.

Check out the photos from the EURORDIS Awards & Black Pearl Evening or see #EURORDISAwards2017.

Elizabeth Vroom, winner of the 2017 Volunteer Award and founder of the Duchenne Parent Project in the Netherlands, commented, “Receiving the EURORDIS Volunteer Award is very special, but even more so because this comes from a community I treasure and consider as family. I am very honoured to receive this award as I know how many people like me work hard to change the lives and future of patients with rare diseases.”

Aldo Soligno, winner of the 2017 Media Award for his Rare Lives photo project, commented, “Spending time with families and patients living with a rare disease has shown me how opposites can meet and transform each other: weakness into strength, sadness into joy, and despair into determination. Seeing this happens simultaneously in seven different European countries has confirmed that there are no boundaries for scientific research and solidarity, and that they must not exist for rare patients. I really hope this will be the legacy of my project.”

Also in attendance of the event was Rare Disease Day Ambassador Sean Hepburn Ferrer, the eldest son of the late Audrey Hepburn, who passed away from a rare cancer.

The EURORDIS Awards recognise the outstanding commitment and achievements of patient organisations, volunteers, companies, scientists, media and policymakers who have contributed to reducing the impact of rare diseases on people’s lives.

Rare Disease Day 2017 is on the 28 February. Find out more about how you can get involved or sign up to the Rare Disease Day Thunderclap campaign.


Eva Bearryman, Communications Manager, EURORDIS