February 28th is Rare Disease Day. Rare Disease Day aims to raise awareness for “orphan diseases” which effect a very small percentage of the population. There is often no cure for a rare disease and they often go undiagnosed. You may remember 2014 craze the ice bucket challenge. This challenge was started to raise awareness for ALS, a disease that breaks down motor neurons and eventually paralyzes those who suffer from it. After the challenge went viral the ALS association received more than double their annual donations as well as 739,000 new donors. A cure has not been found yet but the money has helped researchers find a new gene that causes the disease which will allow for targeted gene development therapy and focused drug development. Only 2 in 100,000 people suffer from ALS and for those people this kind of funding for their disease provided tremendous hope. There are lots of diseases like ALS out there and this is why Rare Disease Day is important.
Rare disease day began in Europe in 2008 with 18 countries participating. In 2009 Canada became a participant. The theme for 2019 is bridging health and social care. The aim is to focus on bridging the gaps in the coordination between medical, social and support services in order to tackle the challenges that people living with a rare disease and their families around the world face every day.There aren’t currently any events scheduled in Victoria but you can consider a donation to Canadian Organization for Rare Disorders.