In the United States a rare disease is defined as any disease affecting fewer than 200,000 people. Since Hemophilia only affects 20,000 people in the U.S., it is considered a rare disease. In a need to join the community of over 7,000 other diseases that affect people in the world, Rare Disease Day was formed. Rare Disease Day is a celebration to bring attention to these rare diseases and bring the different diseases together, across borders, to have a stronger voice and encourage research, education and funding.My video today was created by the Hemophilia Federation of America representing the hemophilia community in that celebration:
Rare Disease Day 2013 from Hemophilia Federation of America on Vimeo.
This is the first year I've heard of Rare Disease Day and next year I hope to do more to spread the word. I did email my newspaper, but they did not respond. I also sent the online letter to my State Representatives. Next year I want to do more.