The Voice of Rare Disease
Patients in Europe
100 days to go – get involved in Rare Disease Day 2018!
Rare Disease Day 2018 is on 28 February, 10 years since it first took place in 2008!
This year’s theme is research; there has been great progress in rare disease research, in large part thanks to the advocacy work of the rare disease patient community. However, the fact remains that there are over 6000 rare diseases, an estimated 30 million people living with a rare disease in Europe and 300 million worldwide, but no cures and few treatments available for the vast majority of these diseases.
To help change this, patient involvement in research needs to be taken to the next level.
Rare Disease Day 2018 offers participants the opportunity to be part of a global call on policy makers, researchers, companies and healthcare professionals to increasingly and more effectively involve patients in rare disease research.
The 2018 campaign focuses patients as proactive actors in research: they kick start, drive, and organise research, as well as proactively providing data. Read more.
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:
- 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!
Any questions? Please contact firstname.lastname@example.org.
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, with participation in 94 countries all over the world in 2017.
EURORDIS Black Pearl Awards
The EURORDIS Black Pearl Awards are held to mark the occasion of Rare Disease Day.
Watch live to find out who wins the 2018 EURORDIS Black Pearl Awards! The Award Ceremony will be live streamed via blackpearl.eurordis.org on 20 February, 2018.
*Please remember, the Rare Disease Day logo cannot be used for commercial purposes. More detail.
Eva Bearryman, Communications Manager, EURORDIS