Languages

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!

Sign up to the campaign using the form on the right of this page.

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 2019

A 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 yourrare 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:

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

We need as many of your signatures as possible to support the nomination of 2019 as the European Year for Rare Diseases.

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?

Start by adding your signature to the campaign using the form on the right of this page. You can also:

Encourage your family, friends and colleagues to sign up by tweeting or posting your support for the campaign on facebook (#EYRD2019) or by emailing them a link to this webpage
Email your members encouraging them to sign up
Use the logo provided below on your website or social media channels
Write a blog about the campaign to get other patient advocates involved
Send a letter (template below) to your policymaker asking them to support the campaign
Watch our webinar (below) on how to get involved.