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10th ECRD | Online, 14-15 May 2020

10th ECRD | Online, 14-15 May 2020
EventsPast Event

ECRD 2020 overarching theme & six parallel themes
“The journey of living with a rare disease in 2030”

The rare disease community has made great strides towards improving diagnosis, care and treatment for people living with a rare disease in recent decades, but without vigilance and constant effort, progress can easily be reversed. The health of 30 million people living with a rare disease in Europe should not be left to luck or chance.

The ECRD 2020 theme “The rare disease patient journey in 2030” recognises that the next decade holds great potential for improvement and that while we cannot predict the future, we all have a role in preparing for it. See the full ECRD programme built around these six parallel themes:

1. The future of diagnosis: new hopes, promises and challenges
2. Our values, our rights, our future: shifting paradigms towards inclusion
3. Share, Care, Cure: Transforming care for rare diseases by 2030
4. When therapies meet the needs: enabling a patient-centric approach to
therapeutic development
5. Achieving the triple A’s by 2030: Accessible, Available and Affordable Treatments
for people living with a rare disease
6. The digital health revolution: hype vs. reality

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Last News & Events

  • IRDiRC Diagnostic Scientific Committee Nomination Call
  • Treatable neurometabolic diseases – Recordati Rare Diseases Foundation course 6-8 October 2022
  • Innovation Bootcamp in Rare Diseases (IBRD2022) congress
  • International Neonatal Screening Day
  • 2023 EU4Health Stakeholders’ Event
  • SSIEM Annual Symposium 2022
  • Pregnancy and Family Planning in rare diseases: a survey for patients and clinicians
  • CPMS Success Stories – Our Metabolic team from the University Hospital of Santiago de Compostela

Activities

  • Publications and Guidelines
  • Unified Registry for Inherited Metabolic Disorders
  • Projects

Disclaimer

MetabERN is a European Reference Network (ERN) approved by the ERN Board of Member States.
The ERNs are co-funded by the European Commission.
For more information about the ERNs and the EU health strategy, please visit ec.europa.eu/health/ern
The content on this website represents the views of the network and is its sole responsibility; it can in no way be taken to reflect the views of the European Commission or any other body of the European Union.

For more information please contact
Prof. Maurizio Scarpa, MD, PhD
MetabERN Coordinator

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