About the EURORDIS Black Pearl Awards

EURORDIS Black Pearl Awards logoThe EURORDIS Black Pearl Awards recognise the outstanding achievements and ground-breaking work of those committed to improving the lives of people living with a rare disease.

The Awards are presented to patient advocates, patient organisations, policy makers, scientists, companies and media at a unique annual event held every year in February to mark the occasion of Rare Disease Day.

Held since 2012, the event highlights the successes of the rare disease community and helps to raise funds for EURORDIS’ programmes aimed at improving the lives of people living with a rare disease and their families.

Nominate a rare disease star

The EURORDIS Black Pearl Awards categories are:

  • Young Patient Advocate Award
  • European Rare Disease Leadership Award
  • Policy Maker Award
  • Scientific Award
  • EURORDIS Volunteer Awards
  • EURORDIS Members Award
  • Company Award for Innovation
  • Company Award for Patient Engagement
  • Company Award for Health Technology
  • International Media Awards
  • Lifetime Achievement Award
  • Holistic Care Award
  • Photo Award


More information on categories and the nomination criteria.

From May to August every year, you can nominate the individual or organisation you feel deserves recognition for their tireless commitment to improving the lives of people living with a rare disease. Only nominations submitted in English will be considered. Nominations can be made by filling out the form or by sending a link to a video of yourself explaining why your nomination is deserved of the prize.

Nominations are shortlisted by a nominations committee and the winners selected by the EURORDIS Board of Directors based on the nomination criteria.

The winners are announced at the EURORDIS Black Pearl Awards Ceremony in Brussels in February, held to mark the occasion of Rare Disease Day

The EURORDIS Photo Award

The EURORDIS Black Pearl Awards include the EURORDIS Photo Award.

Submit a photo that you have taken of your friend or family member/s that visually highlights what it means to live with a rare disease.

Submissions open in November and close mid-January. All photos will be on show to the public in a gallery during this time.

National Geographic photographer Marcus Bleasdale selects a shortlist of photos, which is then open to an interactive public vote held online during February. The winner is announced live at the EURORDIS Black Pearl Awards Ceremony in Brussels in February.

Partner with the EURORDIS Black Pearl Awards

Companies can find out more about partnering with EURORDIS for the Black Pearl Awards here.

Why the EURORDIS ‘Black Pearl’ Awards?

The formation of a natural black pearl is extremely rare. Black pearls are widely considered as the most valuable and beautiful kind of pearls in the world. Just like these pearls, the recipients of the EURORDIS Black Pearl Awards are unique and deserve our recognition for the work that they do.

Despite important advances, the rare disease community continues to face enormous challenges. The work and achievements of the awardees are of paramount importance to improving lives and finding cures for people living with a rare disease.

For more information on the EURORDIS Black Pearl Awards please visit blackpearl.eurordis.org.

The 2017 EURORDIS Black Pearl Award winners

The 2017 EURORDIS Black Pearl Award awardees.

Die Stimme der Menschen mit seltenen Krankheiten in EuropaEURORDIS Die internationale Stimme für Menschen mit seltenen KrankheitenRare Disease International Ein moderiertes mehrsprachiges Forum, das Patienten, Familien und Experten zum Erfahrungsaustausch zusammenführt. RareConnect Das Rare Barometer Programm ist eine EURORDIS-Initiative, die Umfragen durchführt und die Erfahrungen von Patienten mit seltenen Erkrankungen in Fakten und Zahlen umwandelt, die wiederum Entscheidungsträgern vermittelt werden können.Rare Barometer Eine internationale Aufklärungskampagne, die jedes Jahr am letzten Tag im Februar stattfindet. Der Tag der Seltenen Erkrankungen ist eine EURORDIS-InitiativeRare Disease Day Nehmen Sie am größten Zusammentreffen von Interessenvertretern für seltene Krankheiten in Europa teil und besuchen Sie die zweijährliche Europäische Konferenz für Seltene Krankheiten und Orphan-Produkte (ECRD). ECRD ist eine EURORDIS-InitiativeEuropean Conference on Rare Diseases