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Monday, 20 February 2012

Want to know how you can help raise awareness about rare disease? Well February 29th 2012 is rare disease day and there is plenty you can do!

1. If you're on twitter use the #RareDiseaseDay to get it trending worldwide.

2. Send me videos and posts to put on this blog about your experience with a rare disease!

3. Some more easy ideas

  • Display posters, images or other awareness raising media such as ballons
  • Distribute stickers and flyers
  • Organise rare diseases events around topics paramount to patients
  • Organise a competitive event focused on rare diseases
  • Coordinate letter writing or email campaigns to local policy or national policy decision makers
  • Arrange to meet with local and national authorities

Still want to do more? Great! Click here for more ideas!

Don't forget to document your activities by taking photographs and videos and sending us them to feature on the blog!

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  1. Thank you for supporting Rare Disease Day! My son Gage passed away from a rare genetic disease called early-onset LAL deficiency (also known as Wolman disease) in2009. Rare Disease Day means so much to the millions of people and families affected by the approximately 7,000 rare diseases. Thanks again! Mary Pruitt http://www.lalsolace.org

  2. No problem Mary, anything to help raise awareness about rare disease!