In the United States, any disease, disorder, illness or condition that affects less than 200,000 is considered a rare disease. Health conditions such as Tay-Sachs, ocular toxoplasmosis, fragile X syndrome, and ALS (Amyotrophic lateral sclerosis) are just a few examples. However, the National Organization for Rare Diseases (NORD) says that there are more than 7,000 rare conditions that affect about 30 million people in the United States. It is estimated that 1 in 10 people have a rare disease in the U.S. — more than half of them are children.
People who have a rare disease have many different needs, but since it can be difficult to make a correct diagnosis, getting the right treatment can be difficult. Rare diseases affect the lives of people in many ways, not only because they are sick, but because they do not know much about the disease, the diagnosis, the treatment or even what they can expect to happen with their health and quality of life over time.
Sadly, about 95% of rare diseases have no treatment and none of them have a cure. The truth is that the cause of the majority of these diseases is still unknown today, although some of them might be genetic. Knowing your family medical history and discussing it with your health care provider is always a good idea, especially if you plan on having a baby.
Today, February 28th, we help raise awareness on this important issue. Join us and NORD to raise awareness about rare diseases, the impact it has on the people affected by them, their families and the community. Visit rarediseases.org and rarediseaseday.us to learn more.