Rare Disease Day 2022

 In February, there is once again the international Annual Rare Disease Day on February 28, 2022. 

Why is there 'Rare Disease Day'?

It is an international rare disease awareness campaign that takes place on the last day of February every year. The main goal of the campaign is to raise awareness among the general public and decision makers about rare diseases and their impact on patients' lives.

How can you show support for Rare Disease Day?

Raise awareness of what it means to be rare!

More than 300 million people worldwide are living with a rare disease. Together, we are working across borders, and for the more than 6,000 rare diseases, to provide more equal access to diagnosis, treatment, care and social opportunity.

Our key message for Rare Disease Day 2022 is to



Cornelia de Lange syndrome is one of these rare diseases and we know what it means.
We would like to make others aware of it as well, please help us to do so!

Below you will find inspiration for ideas to participate in this year's campaign

  1. Share a photo to show solidarity with people living with a rare disease in your community! Share a photo with painted hands on social media with #RareDiseaseDay and tag @rarediseaseday.
  2. Download the logo from Rare Disease Day and make it visible online. Put the logo on flyers, t-shirts and even cake - the possibilities are endless!
  3. Use key rare disease statistics1 to share the message that rare is many with the media:
    • 300 million people worldwide are living with a rare disease
    • More than 6,000 different rare diseases
    • 72% of rare diseases are genetic
    • 70% of these genetic rare diseases begin in childhood.
    • The impact of the disorder also affects sisters, brothers, father and mother
  4. Advocate with policy makers that people with rare diseases need equal access to diagnosis, treatment and care. 
  5. Add the official Facebook frame to your social media profiles! 
Gerritjan Koekkoek

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Last modified by Gerritjan Koekkoek on 2022/02/14 16:02
Created by Gerritjan Koekkoek on 2022/02/14 15:57

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