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Stars of Rare Disease Community Recognised at EURORDIS Awards Ceremony

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Friday, February 24, 2017

BRUSSELS, Belgium - 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:

  • Policy Maker Award - Frédérique Ries, Member of the European Parliament, Belgium
  • Volunteer Award – Elizabeth Vroom, Duchenne Parent Project, the Netherlands
  • Media Award - Aldo Soligno, Photographer, Rare Lives Project, Italy
  • Company Award - GSK (GlaxoSmithKline) – Rare Diseases
  • Scientific Award - Dr Lucia Monaco, Chief Scientific Officer, Fondazione Telethon, Italy
  • Patient Organisation Award - The Dravet Syndrome European Federation, Spain
  • Lifetime Achievement Award - Anders Olauson, Founder of the Ågrenska Centre, Sweden

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.

About the EURORDIS Awards & Black Pearl Evening
The EURORDIS Awards and Black Pearl Evening serves: to recognise the individuals and organisations that together are improving the lives of people affected by rare diseases; to raise awareness and increase support for the rare disease cause throughout Europe; and to generate funding for EURORDIS programmes. For more information, please visit

About Rare Disease Day
EURORDIS and its Council of National Alliances launched Rare Disease Day in 2008. Held on the last day of February each year, a rare day, it seeks to raise awareness of the impact that rare diseases have on the lives of patients and those who care for them. What began as a European event quickly became international in scope, with participants from more countries joining each year. Since Rare Disease Day began, thousands of events have been held throughout the world, reaching hundreds of thousands of people. The political momentum resulting from the Day has also served advocacy purposes, contributing to the advancement of EU policies on rare diseases and the creation of national plans for rare diseases in a number of EU Member States and now in other countries. Visit, follow @rarediseaseday or like

About EURORDIS-Rare Diseases Europe
EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of over 700 rare disease patient organisations from more than 60 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe. By connecting patients, families and patient groups, as well as by bringing together all stakeholders and mobilising the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies and patient services. Follow @eurordis or see the EURORDIS Facebook page. For more information, visit

About Rare Diseases
The European Union considers a disease as rare when it affects fewer than 1 in 2,000 citizens. Over 6000 different rare diseases have been identified to date, affecting over 60 million people in Europe and the USA alone. Due to the low prevalence of each disease, medical expertise is rare, knowledge is scarce, care offering inadequate and research limited. Despite their great overall number, rare disease patients are the orphans of health systems, often denied diagnosis, treatment and the benefits of research.

Eva Bearryman - Communications Manager, EURORDIS
Tel: +33 (0)1 56 53 52 61
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