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Special New Year’s message from EURORDIS Chief Executive Officer, Yann Le Cam

Январь 2022

A special message from Yann Le Cam, EURORDIS Chief Executitve Officer on the aspirations of the rare disease community for 2022.

2021 ended as it started, with COVID-19 spreading across Europe, threatening the lives of many, especially those living with a rare disease and their families. We have all had to be especially careful, which has often provoked social isolation and made work and education even more difficult.

Millions have been affected by the virus, and many remain affected today, especially those experiencing different forms of severe long COVID, often facing similar challenges to those of persons living with a rare disease.

COVID-19 is a global tsunami that has overwhelmed hospital intensive care units, limited access to healthcare services, and impacted many aspects of our lives, far beyond health. Policy makers are hesitant or struggling to prioritise cancers, rare diseases, mental health, and the public health preventive strategy across communicable or non-communicable diseases over COVID and preparation for the next health threats. And we will see the disastrous consequences of such a narrow-sighted approach over the next 10 to 20 years.

However, this political, economic and ethical mistake can be avoided. Stakeholders from across Europe – in science and technology, genetics and digital transformations, and innovative concepts and strategies – are ready to take on these challenges.

European and national policy makers should recognise the complexity of these issues and the importance of a more comprehensive approach. We need measurable goals, significant financial and human resources, and specific strategic plans, which are aligned with the UN Sustainable Development Goals and are based on the commitment the EU Member States made following the adoption of the UN Resolution on Addressing the challenges of persons living with a rare disease and their families.

In this new year, we have a historic opportunity to rethink and improve our healthcare system, focusing on those often chronic, progressive, and life-threatening diseases, through prevention, care, cure and research, need-driven innovation as well as increased solidarity across borders and populations. The complexity and diversity of these challenges are an opportunity to tackle them altogether, as a whole, recognising complexity and unity.

A comprehensive approach would strengthen our European model of care and improve health and social outcomes for all. We hope that this year European and national policy makers will endorse our call for Europe’s Action Plan for Rare Diseases, followed by a European Commission’s road map and public multi-stakeholder consultations, before its expected adoption by the end of 2023.

Watch the message on our Youtube channel.