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Black Pearl Awards – Awardees

EURORDIS – Rare Diseases Europe wishes to recognise the major achievements and outstanding commitment of patient advocates, patient organisations, policymakers, scientists, companies, and members of the media who strive to make a difference for the rare disease community.

We would like to thank everyone for the hundreds of quality nominations we received! Although we would love to be able to award all of the stars of the community, we must limit the number of awardees each year to 11 categories, appointed by the EURORDIS Board of Directors.

Our 2025 Black Pearl Awardees will be announced on this page every week leading up to the ceremony, so stay tuned!

For the Social Media Award, however, the power is in your hands. Learn more about our amazing Social Media Award finalists and cast your vote! Voting will close on the night of the ceremony itself.

Learn more about the Award Categories.


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Androulla VassiliouAward name: Policy Maker AwardYear of the award: 2012

Currently European Commissioner for Education, Culture, Multilingualism and Youth, Androulla Vassiliou, JD, served as Commissioner for Health and Consumer Policy from February 2008 to end of 2009. During this time, she was instrumental in making significant strides for European citizens living with a rare disease. Of particular importance were her political support that led to the launch of the Public Consultation, Rare Diseases: Europe’s Challenge, and the consequent adoption of the Commission Communication on Rare Diseases in November 2008, as well as the Council Recommendation on Rare Diseases in June 2009.

These two documents have established an overall and comprehensive policy framework, with an EU-wide and integrated strategy between EU and national levels on rare diseases related issues such as information, patient empowerment, research, diagnosis, treatment and care for rare disease patients throughout Europe.

Michele Lipucci Di PaolaAward name: Volunteer AwardYear of the award: 2012

Michele Lipucci Di Paola, PhD is a long standing dedicated volunteer of EURORDIS. He is former Vice President of the EURORDIS Board of Directors and was a member of the Board between 1997-2005.

As a result of the diagnosis of a family member with Thalassemia, he and his organisation AVLT (Associazione Veneta Lotta alla Talassemia) worked in cooperation with other international thalassemia associations to create and provide support to an international network of researchers and clinicians dedicated to identifying new clinical protocols and innovative therapeutic approaches such as gene therapy for this disease.

The result of this activity was support to national and international research projects.

Michele holds a PhD in plant biology and is Associate Professor at the University of Pisa, in addition to serving as patient representative member on the EMA Committee for Advanced Therapies (CAT). Dr. Lipucci Di Paola exemplifies the international movement to improve conditions for people living with rare diseases. His numerous affiliations and achievements have made and will continue to make an important difference at both the national and international levels.