Celebrating Togetherness on Rare Disease Day

February 24, 2015
Patricia Page

Everyone wants to feel like they are unique and special in this world. People with rare diseases are no exception. But when you have a rare disorder, it is also especially nice not to feel alone.

Enter Rare Disease Day, which is celebrated around the world on the last day of February each year. The primary goal for this event is to raise awareness about the impact that these conditions can have on people’s lives. According to the National Organization for Rare Disorders (NORD), there are approximately 6800 conditions that affect fewer than 200,000 Americans (the definition of a rare disease.) That may seem like a small number, but collectively this means that almost 3 Million, or 1 in 10, Americans is affected.

Many rare diseases are genetic conditions like those included on JScreen’s testing panel. It’s not uncommon for families of children with these conditions to live in communities where their child may be the only one affected. For them, raising awareness can play an important role in advocating for their child, advancing treatments, and connecting to others living with the same disease.

This February 28th, please join us in celebrating Rare Disease Day. Whether you decide to learn about a new condition, write to your favorite representative, or join a tweet chat from the comfort of your sofa, you’ll be helping bring us all a little closer together.
 
 

Patricia Page

Tricia Page is a Senior Director at JScreen, where she oversees operations. Her goal is to ensure JScreen is providing vital information that our patients need to plan for their family’s health. Tricia is also an Instructor in Emory University School of Medicine’s Department of Human Genetics. Most importantly, she is the mother of three teenagers. (Sympathy cards welcome.)