Only 100 Days to Rare Disease Day 2018

Preparations have already begun for the 11th edition of Rare Disease Day! Rare Disease Day 2018, which will take place on 28 February, will see thousands of people across the world participating to raise awareness of rare diseases and to push for more patient involvement in research.

Why is building awareness of Rare Diseases so important?

Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point in their life. Despite this, there is no cure for the majority of rare diseases and many go undiagnosed. Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases.

To help improve treatment for rare diseases, patient involvement in research needs to be taken to the next level. This is why research is the theme for Rare Disease Day 2018.

Rare Disease Day 2018 offers participants the opportunity to be part of a global call on policymakers, researchers, companies and healthcare professionals to increasingly and more effectively involve patients in rare disease research.

Rare Disease Day – a global campaign

Since Rare Disease Day was first launched by EURORDIS and its Council of National Alliances in 2008, thousands of events have taken place throughout the world, reaching millions of people. EURORDIS thanks the official Rare Disease Day partners, the National Alliances. The campaign started as a European event and has progressively become a world phenomenon!

In 2017, for the 10th edition of the day, Rare Disease Day events took place in 94 countries and regions on every corner of the globe. Events included everything from fun-runs to conferences and picnics in the park to film festivals! This year there are events already listed in United States, Switzerland and South Africa.

Get involved in Rare Disease Day 2018

Rare Disease Day is for everyone – patients, their families, carers, members of the general public, policy makers, public authorities, industry representatives, researchers and health professionals!

There are many ways to get involved in Rare Disease Day:

• Hold an event and post it on rarediseaseday.org. See the many events already uploaded!
• Your organisation can become a friend of Rare Disease Day.
• Raise and join hands – upload your photo to show your support for Rare Disease Day.
• Tell your story – upload your story, a photo or video to share your experience of what it means to live with a rare disease.
• Download the Rare Disease Day logo for use on your website and event materials.

Also stay tuned for the launch of an exciting new social media campaign, the 2018 poster and video!