Rare disease day 2019

Event Summary

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.

Thousands of events took place in every continent in the world!

  • We welcomed 8 new countries to the movement this year: Dominican Republic, Lesotho, Montenegro, Namibia, Niger, Qatar, Sri Lanka and Zambia.
  • The variety of events was incredible! From a children’s Art Contest and events on Capitol Hill in the US, to fun runs organised in India, a march in Malaysia, and a rare disease symposium in Colombia.
  • In Europe we saw activities in train stations across France, an event on research in Germany and in Africa there was #ShowYourRare face-painting in Nigeria and many more!
  • A Rare Disease Day Policy Event, the Second High-Level Event of the NGO Committee for Rare Diseases took place at the United Nations in New York with the sponsorship of the Permanent Mission of Estonia to the United Nations.

Media Coverage

Rare Disease Day 2019 was reported across the world, from the USA to Serbia, to Malaysia, to the Vatican City!

Social Media Coverage

  • This year brought together three testimonial videos that tell the stories of FilipKarlo 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!
  • 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.

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