Today, the last day of February is International Rare Disease Day
, when we acknowledge and honor the people living with and supporting those diagnosed with rare diseases.
What is a rare disease? In the U.S., any disease affecting fewer than 200,000 people is considered rare. This definition comes from the Orphan Drug Act of 1983
and is slightly different from the definition used in Europe. There are nearly 7,000 rare diseases affecting nearly 30 million Americans. In other words, almost one in ten Americans are suffering from rare diseases. (rarediseaseday.org)
I have spent the last 18 years almost solely devoted to those living with PWS and I cannot deny the frustration I have felt at times of the lack of awareness in our community. I have met champions of this cause; providers, doctors, parents, and teachers. I have watched their dedication and steadfast advocacy and have been in awe. We may be a small group and it can feel like no one else could possibly understand what you are going through but rest assured, there are not only people who know what you are experiencing but people who are passionately studying, researching and creating ways to improve the lives of people with PWS. If you don’t know who they are, reach out, come to conferences, find or start a local chapter and if you are connected to the larger PWS community, reach out to those who are not and bring them in. We may be small but just look at how far we have come over the past 20 years!
“Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has.”