I remember sitting in natural science class when I was a kid and hearing about the expected life cycle of a human being. You are born, you grow, reproduce, grow old, and then you die. At the time that progression sounded about right, and we all assumed that would be the case for most of us–Why wouldn’t it be, right? With all the great medical advances and an all-time high standard of living, people were living longer and healthier than ever. Unfortunately, that’s not the case for a lot of people living with a rare disease in the US.
In the United States, a disease is considered rare when it affects fewer than 1 in 200,000 people. The problem is that there are more than 7,000 different rare diseases! When you add up all the cases, more than 30 million people in the US are living with a rare disease, and half of those cases are children. Of those children affected by a rare disease, 5 million will not live to see their 5th birthday. We grow up believing that if we get sick, there will be a treatment for our illness. That’s not the case when you are diagnosed with a rare disease, which are often neglected by pharma companies when they are allocating funds for research and development of new medications.
I was aware of the existence of rare diseases, but it only took one conversation with Patricia Weltin, founder of Beyond the Diagnosis, to comprehend the magnitude of the problem. Patty is a passionate and tireless worker, who created Beyond the Diagnosis to raise awareness about the prevalence of rare diseases in the US. After our first meeting, we knew that we needed to do our part to spread the word. Last week, we shot the first video of a multi-part project devoted to raising awareness about rare diseases. We can’t wait to share it with all of you. In the meantime, please go to the Beyond the Diagnosis website and help spread the word.