For the last few years, the last day of February has been internationally observed as Rare Disease Day. Rare diseases have a low prevalence and a high degree of complexity. Considered individually, rare diseases affect small numbers of people. Therefore many of these diseases do not attract much funding or attention. However in the US there are over 6,000 rare diseases - affecting a total of 30 million Americans.

Rare Disease Day sends the message that “Alone we are Rare. Together we are Strong.” It also tries to raise awareness, not just of the various diseases, but of the difficulties that families who are affected by these diseases may face in terms of obtaining treatment and health coverage.

The international website for Rare Disease Day: http://www.rarediseaseday.org/

The US website for Rare Disease Day: http://rarediseaseday.us/

The National Organization for Rare Diseases (NORD) is a US non-profit organization that serves as a federation of various health organizations serving people with rare diseases and as a national clearing house. NORD provides information about disease to doctors and patients, provides research grants, assists with advocacy, and provides medication assistance programs to needy patients. http://rarediseases.org/


If you or a loved one as a Rare Disease, please feel free to share your story in this thread.