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Black Pearl Awards 2024: Meet Alain Coheur, Recipient of the EURORDIS Policy Maker Award 

February 2024

Each year, the EURORDIS Black Pearl Awards honour those making strides in the rare disease community. 

Among this year’s awardees is Alain Coheur, recipient of the EURORDIS Policy Maker Award. 

Ahead of this year’s awards ceremony, Alain speaks to us about his journey, his insights and the significant role of the European Economic and Social Committee (EESC), the European Union’s advisory body representing organised civil society. 

We celebrate the significant contributions that Alain has made at the EESC in sustaining vital political momentum towards the EU’s development of a European Action Plan for Rare Diseases

Alain Coheur’s career, deeply rooted in his experiences as a healthcare professional, has been driven by a profound understanding of health as our “most precious asset.” His pivotal role several years ago in launching the EMRaDi project in the Euregio Meuse-Rhine region underlines his commitment to addressing the complexities and inequities in rare disease healthcare. For Alain, this project illuminated the multifaceted challenges rare disease patients face, setting the stage for broader advocacy at the European level. 

The European Economic and Social Committee (EESC), where Alain has been actively involved, has stood for Alain as an important bastion for the advance of EU citizens’ social and health rights. “We are the only European body that has citizens’ fundamental rights in its DNA,” he asserts, highlighting the EESC’s unique position in the EU framework.

In 2022, Alain served as the Rapporteur for the EESC Opinion on rare diseases, recommending establishing a comprehensive European action plan on rare diseases with SMART goals attainable by 2030. The Opinion highlighted marked disparities in the treatment of rare diseases across Member States, advocating for a unified and strategic approach at the EU level. It offered a comprehensive assessment of progress in European policy relating to a range of rare disease policy areas. These areas included hastening diagnoses, improving access to treatments, better harnessing health data, bolstering European networks of clinical expertise, and more. 

The Opinion was inspired by Alain’s work with EMRaDi and the evolving European health policy landscape. Discussing the impetus for the report, Alain explains that he and his colleagues “became more aware of the profound differences that exist between Member States with regard to their implementation of plans to combat rare diseases.” He also explains that the Opinion “coincided with the Covid crisis and the realisation of the importance of a European approach in the fight against health crises, chronic diseases [and] non-communicable diseases.” 

Publication marked a turning point in the EESC’s focus on rare diseases.  

Alain Coheur smiles and stands in front of flags representing EU countries.

The October 2023 conference on rare diseases held in Bilbao, orchestrated by the EESC, stemmed directly from the EESC’s Opinion. Alain observed that the conference “created an unprecedented momentum.” The event, and consequent efforts between the European Commission and the EESC to convene a subsequent gathering in Brussels during Belgium’s Presidency of the EU Council, reflect an escalating engagement with the rare diseases issue among key policymakers. Only a fortnight after the Bilbao event, Stella Kyriakides, the EU Commissioner for Health and Food Safety, remarked on the potential development of European Commission policy strategy: “If we were capable of doing what we did for cancers, we can do it for rare diseases.” 

As the EU moves into a new legislative period following elections to the European Parliament and the appointment of a new European Commission, Alain’s vision for the future is clear. He advocates for the inclusion of rare diseases in the agenda of the future European Commissioner for Health and calls for comprehensive actions like a dedicated unit within DG Health, the creation of a new European authority for non-communicable diseases, and a parliamentary committee focused on rare diseases. 

The recognition of Alain Coheur as the winner of the 2024 EURORDIS Policy Maker Award is not only a celebration of his individual achievements but also a recognition of the importance of dedicated and compassionate policy advocacy in the field of rare diseases. His work at the EESC and beyond has been instrumental in bringing to light the challenges faced by those with rare diseases and in shaping policies that promise a more inclusive, equitable, and responsive healthcare system across the EU. 

The 2024 EURORDIS Black Pearl Awards will be taking place on 20 February 2024, both online and in Brussels. Register to attend today!

Felix Allan, Communications Intern