European policies are influenced by the priorities of their member countries. Rare diseases are featured on the agenda of the upcoming Trio of EU Council Presidencies, held by France, Czech Republic and Sweden between January 2022 and June 2023. ECRD 2022 has been designated as an official event of the 2022 French Presidency of the Council of the European Union, which demonstrates considerable support to keep rare diseases as a priority.
On an international level, the United Nations’ adoption of a Resolution on Addressing the Challenges of Persons Living with a Rare Disease in December 2021 also creates the enthusiasm and opportunity to align the European and UN agendas.
It is therefore now the time to consider a new policy framework for Rare Diseases in Europe. This framework would provide an opportunity to set three ambitious goals and a number of sub-targets to tackle Europe’s challenges:
- Ensuring healthy life and well-being for all people living with a rare disease at all ages,
- Reducing inequalities for people living with a rare disease,
- Building resilience infrastructure, promoting inclusive and sustainable industry and fostering innovation
- for people living with a rare disease.
These goals are aligned with several of the UN Sustainable Development Goals (SDGs) and help accelerate Europe’s contribution in achieving them.
The ECRD will be the perfect occasion to discuss how to make these proposals a reality.
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