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ERNs on Air: EURACAN Registry, developing a long-term vision together
A podcast highlighting how EURACAN ePAGs and clinicians collaborate to establish a rare cancer registry.
Black Pearl Awards 2024: Meet Alain Coheur, Recipient of the EURORDIS Policy Maker Award
Alain Coheur, honoured with the 2024 EURORDIS Policy Maker Award, is celebrated for his advocacy in shaping EU policies.
EURORDIS launches the Social Policy Action Group (SPAG)
EURORDIS has today launched the new Social Policy Action Group (SPAG), which will support EURORDIS to shape policies relating to holistic care, and social and human rights for those with a rare disease.
Mobilising policymakers
EURORDIS is committed to engaging with policymakers at all levels of government, and through its various initiatives, it seeks to raise awareness about the needs of people living with rare diseases. In 2019, EURORDIS created the Network of Parliamentary Advocates for Rare Diseases, which engages with Members of the European Parliament (MEPs) and national lawmakers […]
European Union elections 2024
The European Parliament elections, scheduled from 6 to 9 June 2024, present a critical opportunity for the rare disease community in the EU. To date, the 30 million Europeans living with a rare disease in Europe still have high unmet needs in a wide range of areas, including accessing early and appropriate diagnosis, treatment and health and social […]
ECRD 2024: Bigger and more unmissable than ever
In exactly six months’ time on 15-16 May 2024, Europe’s rare disease community will come together for the 12th edition of the European Conference on Rare Diseases and Orphan Products.
How to Address the Mental Health Needs of People in Vulnerable Situations? A Call for the EU Comprehensive Approach to Mental Health to Leave No One Behind
This gathering will focus on the European Commission's Compehensive Approach for addressing the mental health challenges confronting EU citizens, particularly in the wake of the pandemic.
Joint Statement on UHC at the United Nations
Formal statement on behalf of the NGO Committee for Rare Diseases (CONGO), EURORDIS-Rare Diseases Europe (ECOSOC “EURORDIS European organisation for Rare Diseases”), Agrenska (ECOSOC), Rare Diseases International (RDI) and the Federación Española de Enfermedades Raras (FEDER) In this statement, presented at the high-level meeting on Universal Health Coverage (UHC) at the United Nations Headquarters in New […]
Interview with Yann Le Cam: Reflecting on a Quarter Century as Chief Executive Officer
We speak to Yann about what strategic approaches have been central to EURORDIS’ success, the ways that the organisation has evolved, and what the future looks like.
HTx – Next Generation HTA
HTx – Next Generation HTA (Health Technology Assessment) is a Horizon 2020 project supported by the European Union. The main aim of HTx is to create a framework for the Next Generation Health Technology Assessment (HTA) to support patient-centered, societally oriented, real-time decision-making on access to and reimbursement for health technologies throughout Europe. Project duration: […]