Rare Disease Day

People around the world will be observing Rare Disease Day on February 28th. This day of awareness started last year in Europe and quickly spread across the world bringing many countries to get involved for February 28th of 2009. In the United States the National Organization of Rare Disorders) is the main organization putting great focus on the day. Encouraging states to proclaim February 28th as the Rare Disease Day, they have been successful in 5 states. A new organization has become very involved with the Rare Disease Day; The Project, Children’s Rare Disease Network/. Bringing Change for Change to communities all over the country.


Great video to watch, created by a mom of twins who have a rare disease.

Just how does the undiagnosed community fit into the rare disease focus? Having an undiagnosed condition for an extended period of time should certainly be considered rare. Without a diagnosis you don’t have anyone to compare the situation to, making it seem like a one and only disease. It isn’t known just how many of those who are undiagnosed may have a common disease or a rare disease. It would seem as though a good percentage would end up being diagnosed with a rare disease. Many common diseases and rare diseases have estimated how many they believe are undiagnosed with that specific disease. It may be an interesting study to add up all the data from diseases that quote percentages of undiagnosed cases and see how many people are undiagnosed in the US or World. The period between having symptoms and getting a diagnosis would be the undiagnosed period. Though there is even a period before the symptoms are noticed which is also considered undiagnosed, maybe it should have a different name. So everyone who has a diagnosis had a period of being undiagnosed whether knowing or not. Then we have the term undiagnosable, how many years or how many doctor visits does one have to be undiagnosed for someone to use that term. Maybe we should consider defining this making it clear to everyone. For some this makes the line harder to see for considering whether undiagnosed conditions fit in the rare disease realm. I feel undiagnosed situations fit well in the rare disease category. That is why SWAN USA will be supporting the Rare Disease Day.