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Rare Disease Day

 

Rare Disease Day is an international event held each year on the last day of February to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.

Cavernous angiomas are considered a rare disease in the United States and elsewhere. In the United States, a rare disease is defined as one in which fewer than 200,000 are diagnosed. Although we don't have exact numbers because there has not be adequate tracking, we believe approximately 50,000 individuals are diagnosed in the US.

You can help raise awareness by using observance of this day to:

  • contact your local media outlets to tell your story 
  • contact your government officials to communicate the need for more research funding
  • download Facebook and Twitter images for your social media pages and share information about your rare disease with your friends and followers
  • upload your story on the Rare Disease Day website for their YouTube and Flickr campaigns
  • donate to Angioma Alliance in honor of Rare Disease Day