While rare diseases are, as the name suggests, rare, when grouped together they are in fact quite common. According to the National Organization for Rare Diseases, one in every 10 people has a rare disease. You probably even know one or two people with a rare disease. A rare disease is defined as a disease that affects less than 200,000 people globally. The really crazy thing about rare diseases is, even though they are not as rare as one would think, very little to no research is conducted into cures and medicines for these diseases. Just as surprisingly, not much effort is put into education about these diseases by medical schools or other institutions. Consequentially, many, perhaps even most people that have rare diseases spend a considerable amount of time either misdiagnosed or undiagnosed, caught in a devastating confusion of what is wrong with them. And when they do get diagnosed, they may be even more let down to find that because of the rarity of the disease, there has not been any research into development for cures. This is the reality that so many of us who have rare “zebra” diseases, as they are sometimes called, and I want to make that reality better.
For more information, please download and share the National Organization for Rare Disorders (NORD)’s Rare Disease Fact Sheet which provides the need-to-know information on rare diseases as a whole