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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 2024 Black Pearl Awardees will be announced on this page every week leading up to the ceremony. Stay tuned! 

Download the full list of Award Recipients (2012-2023)
Learn more about the Award Categories.


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Kateřina KonečnáAward name: Policy Maker AwardYear of the award: 2021

The EURORDIS Policy Maker Award recognises Kateřina Konečná’s dedication into making real differences in the rare disease community. In her role as a member of the European Parliament she has shown incredible leadership and excellence in championing the rare disease cause in Europe. As a Member of the European Parliament (Czech Republic), Kateřina Konečná is a member of the ENVI Committee where she focuses on access to healthcare and a number of public health issues often addressing inequalities across EU countries. In this context, she has been a champion for the rare disease community bringing awareness on patient engagement in HTA or on increased funding for ERNs. In the previous term, she was actively engaged in activities of the network of Parliamentary Advocates for Rare Diseases, and in the current term, she is a signatory of the Pledge4RD. She is also engaged in the European Parliament Working Group on innovation, access to medicines and poverty-related diseases, and the Interest Group on Patient Access to Healthcare, both of which she co-chairs. At national level, Ms. Konečná also works closely with the rare disease patient alliance in her home country and the national centre for rare diseases.

Victoria HedleyAward name: European Rare Disease Leadership AwardYear of the award: 2021

Victoria has been an active participant in the generation of rare disease policies and policy-related outputs since 2012. She currently leads the knowledge-based activities of the Rare 2030 foresight project and previously led the policy side of RD-ACTION, the EU Joint Action for Rare Diseases. She has experience and understanding of a wide range of topics under the Rare Disease umbrella and belonged to the coordination team for the EUCERD Joint Action for RD. In these capacities she contributed to the development of EU-level Recommendations around topics such as CrossBorder Genetic Testing; the Incorporation of Rare Diseases into Social Services and Policies; Patient Registration and data collection; National Plans and Strategies; and, most prominently, European Reference Networks. She led RDACTION support for the conceptualisation and implementation of European Reference Networks (ERNs), and designed key workshops to assist the ERNs in addressing shared policy challenges. For the past 5 years she has led the resource on the ‘State of the Art of Rare Diseases Activities in Europe’. On the research side, Victoria co-leads the data-related activities on conect4children and is a seed member of the GO-FAIR Implementation Network for Rare Diseases. She is now colead of the new Newcastle Centre for Rare Diseases, which she brought to fruition in 2020, and which is now consolidating the broad range of disease-focused and methodological expertise in the Newcastle region, to optimise patient-centred research and innovation. Reference Networks (ERNs), and designed key workshops to assist the ERNs in addressing shared policy challenges. For the past 5 years she has led the resource on the ‘State of the Art of Rare Diseases Activities in Europe’. On the research side, Victoria co-leads the data-related activities on conect4children and is a seed member of the GO-FAIR Implementation Network for Rare Diseases. She is now colead of the new Newcastle Centre for Rare Diseases, which she brought to fruition in 2020, and which is now consolidating the broad range of disease-focused and methodological expertise in the Newcastle region, to optimise patient-centred research and innovation.