There are approximately 7,000 rare diseases affecting an estimated 30 million Americans
The powerful new Harrison Ford movie, Extraordinary Measures, is based on a true story about a family struggling with a rare disease. In 1998, two of John and Aileen Crowley’s children were diagnosed with Pompe Disease, a rare, inherited disorder that disables the heart and muscles. When the Crowley children were diagnosed there were no medicines to treat Pompe Disease.
John Crowley raised more than $100 million dollars to launch biotechnology companies to develop the cure. In the movie Brendan Fraser portrays John Crowley and Harrison Ford plays a composite of the researchers and scientists that collaborated with John to find a treatment.
The film documents some of the challenges that many people with rare diseases face: difficulty in finding medical experts, delay in receiving an accurate diagnosis and access to few, if any, treatment options.
What’s a rare disease?
In the United States, rare diseases, also referred to as “orphan diseases,” are generally defined as diseases that affect fewer than 200,000 individuals in the United States. There are approximately 7,000 rare diseases affecting an estimated 30 million Americans, though the number of individuals confronting any one of these disorders can be quite small. To find information about rare disorders, go to http://rarediseases.org.
This post was contributed by Eileen O’Brien, Director of Search & Innovation for Siren Interactive. You can connect with her on Twitter at @eileenobrien.