The European Conference on Rare Diseases & Orphan Products (ECRD) is recognised globally as the largest, patient-led rare disease event in which collaborative dialogue, learning and conversation takes place, forming the groundwork to shape goal-driven rare disease policies and allow for important and innovative discussions on a national and an international level to take place.
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Putting rare diseases policy into action
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:
1. Ensuring healthy lives and promoting well-being for all people living with a rare disease at all
2. Reduce inequality within and among countries by focusing on equity for people living with a rare disease
3. Building resilient infrastructure, promoting inclusive and sustainable industry and forstering innovation for people living with a rare disease