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Rare Disease Day 2019 | 28 February 2019

Rare Disease Day 2019 | 28 February 2019
EventsPast Event

The Rare Disease Day 2019 theme is ‘Bridging health and social care’.

What?

It takes takes place on the last day of February each year. The main objective of the day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.

Who?

Events are down to hundreds of patient organisations all over the world who work on a local and national level to raise awareness for the rare disease community in their countries.

For more information and to find out how you can get involved visit the Rare Disease Day website here.

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Last News & Events

  • Questionnaire on the Treatment of Primary Mitochondrial Disorders with Vitamins and Cofactors
  • Positive Results for MetabERN and ASUFC in the Five-Year Evaluation Process of European Reference Networks (ERN)
  • 20th Annual WORLDSymposium – February 4-9, 2024
  • DCTEP Learners’ Stories:  What does an educational programme on IMDs have to offer to young healthcare professionals?
  • Call on the EU institutions and EU Member States’ governments to stand by the European Reference Networks
  • MOOC From Lab to Clinic: Translational Research for Rare Diseases
  • DCTEP learners’ stories: How does an e-learning on IMDs really look like?
  • Conference on Rare diseases and European reference networks in Bilbao

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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