European policies are influenced by the individual priorities of member countries. A priori, rare diseases are on the agenda of the Council of the EU, which will be presided over in turn by France, the Czech Republic and Sweden from January 2022 to the end of June 2023. ECRD 2022 (European Conference on Rare Diseases) has been labelled as an official event of the French Presidency 2022 of the Council of the EU, which shows considerable support and willingness to prioritize rare diseases.
At the international level, the adoption in December 2021 by the United Nations of a Resolution calling for "addressing the challenges faced by people living with a rare disease" is equally exciting, especially as it provides an opportunity to align the UN and EU agendas.
It is therefore time to consider a new European framework for action on rare diseases in Europe. This framework would set three main objectives and several secondary objectives to address the challenges observed in Europe:
- Empowering people to live healthy lives and promoting wellness for all people with rare diseases at all ages,
- Reduce inequalities for people with rare diseases,
- Create resilient infrastructure, promote an inclusive and sustainable industry, and foster innovation for people with rare diseases.
These goals correspond to several of the United Nations Sustainable Development Goals (SD Gs), which would help Europe to achieve them more quickly.
The ECRD will be the perfect opportunity to reflect together on how to put these proposals into practice.
For more information 👉🏽 www.rare-diseases.eu
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