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).<\/p>\n
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.<\/p>\n
\u201cDid you know there are nearly 30 million Americans living with a rare disease? That is almost one in 10 of us,\u201d begins the ad.\u00a0 \u201cEveryone knows someone with a rare disease.\u201d<\/p>\n
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.<\/p>\n
\u201cWhen you consider that there are nearly 7,000 rare diseases like the one that claimed my mother\u2019s life, the numbers add up dramatically,\u201d says Ferrer.<\/p>\n
The new campaign marks the 200-day countdown to Rare Disease Day\u00ae, 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.\u00a0 NORD is the sponsor and host of Rare Disease Day the U.S.\u00a0 The next Rare Disease Day will take place on February 29, 2016.<\/p>\n
\u201cWe 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,\u201d said Lisa Phelps, Director of Marketing and Community Relations at NORD.\u00a0 \u201cOur hope is for this campaign to open people\u2019s eyes to rare diseases and to let patients and families know that they are not alone, and that together we can make a difference.\u201d<\/p>\n
The PSA will begin airing on television stations around the country this month.\u00a0 It is part of Ferrer\u2019s ongoing efforts to help people affected by rare diseases.\u00a0 He is the author of a children\u2019s 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.