Aug. 12, 2015
TOPIC: Featured News
Posted by Jennifer Huron
Sean Hepburn Ferrer, son of actress Audrey Hepburn, is calling for more awareness of rare diseases in a new PSA with the National Organization for Rare Disorders (NORD).
Audrey Hepburn died of a rare form of cancer and it was the way she lived her life, demonstrating that every life matters, which inspired Ferrer to join NORD as an advocate for all people with rare medical conditions.
“Did you know there are nearly 30 million Americans living with a rare disease? That is almost one in 10 of us,” begins the ad. “Everyone knows someone with a rare disease.”
According to the National Institutes of Health, there are approximately 7,000 rare diseases, defined in the U.S. as one that affects less than 200,000 people. Less than 5 percent of rare diseases have an FDA-approved treatment and there are zero cures.
“When you consider that there are nearly 7,000 rare diseases like the one that claimed my mother’s life, the numbers add up dramatically,” says Ferrer.
The new campaign marks the 200-day countdown to Rare Disease Day®, an observance day celebrated worldwide on the last day of February each year to raise awareness for rare diseases and improve access to treatments and medical representation for patients and their families. NORD is the sponsor and host of Rare Disease Day the U.S. The next Rare Disease Day will take place on February 29, 2016.
“We are grateful to Sean for sharing his personal story and for helping us raise awareness of rare diseases, which affect 30 million Americans, two-thirds of whom are children,” said Lisa Phelps, Director of Marketing and Community Relations at NORD. “Our hope is for this campaign to open people’s eyes to rare diseases and to let patients and families know that they are not alone, and that together we can make a difference.”
The PSA will begin airing on television stations around the country this month. It is part of Ferrer’s ongoing efforts to help people affected by rare diseases. He is the author of a children’s book, MAURICIO OF URUGUAY, which tells the inspiring story of his friend, Mauricio Saravia, an artist, poet and musician who lived a deeply impactful life and had the rare genetic disease known as McCune-Albright syndrome. Proceeds from book sales in the U.S. are donated to NORD.