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Conference to pave the way for the next decade of rare diseases

While great progress has been made thanks to scientific advances and efforts at the EU and national levels, the last rare disease strategy and the only one so far was over a decade ago. Since then, technology, science and indeed legislation have progressed, but many people living with a rare disease are still facing unmet needs and inequities in accessing a diagnosis, treatments and care, leaving them marginalised in society. A coordinated strategy is the only way to ensure that actions are considered and coordinated in a comprehensive manner to reach meaningful goals for patients, families and for society at large.

This will be the focus of the largest patient-led European Conference on Rare Diseases and Orphan Products (ECRD) 2022, an official event of the 2022 French Presidency of the Council of the EU. This 11th edition follows a pivotal two-year Rare 2030 Foresight Study, supported by the European Parliament and European Commission, that guided a large-scale and multi-stakeholder reflection on rare disease policy in Europe through 2030.

“The EU has the science, the healthcare and the industry to help patients suffering from rare diseases.
Political will and incentives can turn science into treatments.”
– Boris, France (#30millionreasons campaign)

The ECRD 2022 programme mirrors current political opportunities and policy milestones – such as the United Nations Resolution on Addressing the Challenges of Persons Living with a Rare Disease adopted last year – and also presents an opportunity to hear from the European and international institutions, key opinion leaders working in the field and persons living with a rare disease to shape the best possible future framework of policies. This framework would provide an opportunity to set three ambitious goals and a number of sub-targets to tackle Europe’s challenges, including:

● Ensuring healthy lives and promoting well-being for all people living with a rare disease at all ages;
● Reducing inequality within and among countries by focusing on equity for people living with a rare disease;
● Building resilient infrastructure, promoting inclusive and sustainable industry and fostering innovation for people living with a rare disease.

Aligned with several of the UN Sustainable Development Goals (SDGs), these goals would help accelerate Europe’s contribution to achieving the UN Agenda 2030.

Taking place online from 27 June to 1 July, the ECRD is recognised globally as the largest, patient-led rare disease policy event in which collaborative dialogue, learning and conversation take 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.

Leading, inspiring and engaging all stakeholders to take action, the Conference is an unrivalled opportunity to network and exchange invaluable knowledge with over 1500 stakeholders in the rare disease community – patient advocates, policy makers, researchers, clinicians, healthcare professionals, healthcare industry representatives, academics, payers, regulators and Member State representatives.

“A rare disease makes life difficult for the whole family. Even the slightest help can make a huge
difference in the lives of every family member."
– Maria, Hungary (#30millionreasons campaign)

Don’t miss out on this unique opportunity to drive change for a better future for the 30 million Europeans living with a rare disease. Register now at:

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