News

Thu 14 March, 2019

Thank you to all who took part in Rare Disease Day 2019

We have come a long way from the first Rare Disease Day which took place over a decade ago in 2008 when 18 countries took part. This year, Rare Disease Day was celebrated by patient groups, policy-makers, healthcare professionals and industry representatives in a record 101 countries! We saw another successful year of the #ShowYourRare campaign with thousands of people using the hashtag to raise awareness and show their support.

The theme this year was “Bridging health and social care” which focused on bridging the gaps in the coordination between medical, social and support services in order to tackle the challenges that people living with a rare disease and their families around the world face every day.

Rare Disease Day events

Did you host or attend a Rare Disease Day event in 2019? Upload your photos and videos to our website and send us your press clippings and links to videos if you had any media coverage for our media page!

Rare Disease Day 2019 testimonial videos

  • This year brought together three testimonial videos that tell the stories of Filip, Karlo and Lorena and their experience of daily life with a rare disease. A special thank you to Rare Diseases Croatia, The Romanian National Alliance For Rare Diseases and The Federación Española De Enfermedades Raras for their work on the videos.
  • The videos were translated into over 35 languages!

Social media success

  • People around the world painted their face to show support for those living with a rare disease for the #ShowYourRare social media campaign.
  • #RareDiseaseDay trended on Twitter in at least seven countries: Belgium, Canada, France, Netherlands, Spain, UK and US.
  • Well known public figures showed their support for Rare Disease Day on social media including, Vytenis Andriukaitis, EU Commissioner for Health and Food Safety, Dr Tedros Adhanom Ghebreyesus, Director General of the WHO and Members of European Parliament. The Empire State building was also lit up in the colours of Rare Disease Day.

Media coverage

We want to hear from you!

  • Did you host or attend a Rare Disease Day event in 2019? Upload your photos and videos to our website and send us your press clippings and links to videos if you had any media coverage for our media page!
  • It’s not too late to post your face paint photos to social media! Remember to use #ShowYourRare and #RareDiseaseDay so we can see your amazing pictures!
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