Rare Disease Day was first launched by EURORDIS and its Council of National Alliances in 2008. Since then it has spread with events all around the world that reach hundreds of thousands of people. Rare Disease Day always takes place on the last day of February.
The goal of Rare Disease Day is to raise awareness of the struggle that rare disease patients and families live with. In many cases there is no treatment available, or they don’t have access that treatment. Access to available treatment is fundamental and yet we put families in the position where they often have to beg for that treatment. This isn’t right.
What is a Rare Disease?
The first thing that you might wonder is, what is a Rare Disease? There are many definitions, but basically it is a disease that affects fewer than about 1 in 2,000 people. Some diseases are classed as ultra-rare. Pompe disease, for example, affects 1 in 40,000 births. There are about 7,000 rare diseases affecting roughly 1 in 12 people. About 2/3 of those affected are children.
Most rare diseases are genetic. With advances in genetics, we’re able to diagnose patients with more success than in the past. This is exciting, not because we find out they’re sick, but because we are able to determine what they are sick from. Knowledge is power and this means they are able to make lifestyle changes, or access correct treatments that might not have been possible before.
It’s important to note that not all rare diseases are visible. Some are, and are very serious and debilitating. Some aren’t though and they can be just as serious. It’s hard to know, for example, if someone is in pain or if they’re having mental problems. This is just one more reason why we have to learn tolerance and understanding in how we live with other people.
Learn from Families
We can learn a lot from listening to people struggling and living with rare disease. Two excellent places to learn from real people are Rare Disease Day and Global Genes.
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Tagged: Awareness, Rare Disease Day