The Campaign for a European Year for Rare Diseases 2019

You can make a difference in the campaign for a European Year for Rare Diseases 2019!

Everyone across all rare diseases can get equally involved and treat the campaign as their own. By pulling together for this common goal, the rare disease community will have a louder voice.

How will the European Year for Rare Diseases 2019 benefit you?

Campaign for European Year for Rare Diseases 2019A European Year for Rare Diseases will be a fantastic opportunity to:

  • Be part of the European rare disease movement and make a difference
  • Build awareness or hold events for your rare disease in your country or locally
  • Inform the public about your disease by participating in the campaign
  • Bring the issues that rare disease patients face to the attention of the general public, policymakers and rare disease researchers
  • Help to ensure rare diseases are continuously considered a public health priority
  • Stimulate much-needed rare disease research
  • Continue the momentum of the annual Rare Disease Day Campaign
  • Build hope and make real change for rare disease patients.

The European Year for Rare Diseases can be embraced within each EU Member State and adopted as a national year for rare diseases. It also provides a framework for individual organisations and alliances to have their own year for their rare disease.

Why a European Year for Rare Diseases in 2019?

Let’s reach out to patients and families in isolation, create buzz in the media and make politicians take notice of the issues that people living with a rare disease face in their daily lives.

Increased awareness will encourage policymakers to pay the attention needed to make rare diseases a public policy and budget priority and will also inspire researchers to focus more on rare diseases.

2019 is an important year for the rare disease community because it marks two important anniversaries:

  1. 20 years of orphan medicines policy at the European and national level.
  2. 10 years of EU rare disease actions within EU Commission policies and in EU member states.

What is a European Year?

Every year, the EU chooses a specific subject to encourage debate and dialogue within and between European countries. The aim of the European Year is to raise awareness of a certain topic. A European Year can also send a strong political signal to gain a commitment from EU institutions and Member State governments that the subject will be taken into consideration in future policymaking. Read more on past European Years.

How can you get involved?

  • Create a buzz on social media via facebook or twitter using the hashtag #EYRD2019!
  • Help shape the campaign! What would a European Year for Rare Diseases mean to you, your organisation or your country? What would you like to see from the EYRD 2019? What events or campaigns would you do during the EYRD 2019? We are interested in your feedback! Email us with any ideas at or tweet us using the #EYRD2019.
  • Stay tuned on our dedicated webpage, via the eurordis enews and on social media for updates as the campaign develops.


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A voz das pessoas com doenças raras na EuropaEURORDIS A voz internacional das pessoas com doenças raras, Rare Diseases Internacional, é uma iniciativa da EURORDISRare Disease International Reúne doentes, famílias e especialistas para partilhar experiências num fórum multilinguístico. A RareConnect é uma iniciativa da EURORDIS RareConnect An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Adira ao maior encontro europeu das partes interessadas no âmbito das doenças raras na Conferência Bienal Europeia sobre Doenças Raras e Produtos Órfãos. A ECRD é uma iniciativa da EURORDISEuropean Conference on Rare Diseases