Reframe Rare: A Rare Disease Day Policy Event

To mark the occasion of Rare Disease Day 2020, EURORDIS – Rare Diseases Europe holds a policy event at the European Parliament to “Reframe Rare” and discuss areas of action at EU level that can contribute to the integration of people living with a rare disease into society and improve their lives. The idea to reframe the current policy strategy was recommended in a recent report of the European Court of Auditors in June 2019, endorsed by the Council of the European Union, and the European Commission has accepted to revise its strategy where appropriate and relevant by early 2023, taking stock of achievements, lessons learned, and persistent challenges. Taking this into account, the event will follow a format in which a number of speakers (including patients and MEPs) will engage in a series of conversations around key areas of action at EU level to precisely highlight achievements and new opportunities that have emerged in the field, such as scientific advances, digital tools and big data, as well as the associated challenges such as affordability and sustainability that come with them.

The event will also be the occasion for EURORDIS-Rare Diseases Europe to launch a call for Members of the European Parliament to join a network of Parliamentary Advocates for Rare Diseases, an informal group of committed MEPs willing to explore and discuss specific challenges faced by people living with a rare disease and ensure stronger EU-wide action through targeted support in health, research, social affairs and other relevant policies. We call on stakeholders – from the European Institutions and national governments, the NGO community, academic and research institutions, as well as the private sector – to join and open up the conversation about a renewed framework for rare diseases within the European Union.

Dr. Daria Julkowska, the EJP RD Coordinator, is among the speakers invited to this event and will give a talk under the “Research and innovation” framework, together with Prof. Alberto Pereira, Coordinator European Reference Network for Rare Endocrine Conditions (Endo-ERN) that will be part of the “Cross-Border Healthcare and access to specialised care” session.