Rare Disease Day 2013 - Video Thursday

      Whenever I tell someone my son has hemophilia, it never starts with..”It’s a rare disease.   I just always say, "It's a bleeding disorder".  But in actuality, it is a rare disease.  I am use to hearing the term disease to describe an illness a person catches, but not one they are born with.   A disease in fact is more than just something someone can catch, but it is defined as: an abnormal condition that affects the body of an organism.

      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.