HONORING THE LEGACY OF AUDREY HEPBURN FOR RARE DISEASE DAY AWARENESS

HONORING THE LEGACY OF AUDREY HEPBURN FOR RARE DISEASE DAY AWARENESS

Author/Son Sean Hepburn Ferrer Discusses His Mom’s Courageous Battle Against a Rare Disease Joined by NORD President & CEO Peter Saltonstall

Actress Audrey Hepburn died of a rare type of cancer but it was the way she lived her life that inspired her son, Sean Hepburn Ferrer, to write two books and become an advocate for all people with rare diseases. Sean chronicled the life of his famous mom, who was a humanitarian and Goodwill Ambassador for UNICEF. He also wrote a wonderful children’s book, MAURICIO OF URUGUAY, about the extraordinary life of a friend who also died from a rare disease. On February 12, Ferrer will discuss Rare Disease Day and how the public can get involved in helping people and families living with rare diseases. This year, a film about a rare and incurable disease is actually nominated for an OSCAR in the short-subject documentary category. The film OUR CURSE, chronicles the struggles of one family after their baby is diagnosed with CCHS (congenital central hypoventilation syndrome), also known as “Ondine’s Curse.”

Any disease that affects less than 200,000 people is considered rare. There are nearly 7,000 rare diseases. Although each disorder alone affects a small number of patients, together they impact nearly 30 million Americans – or approximately one in every 10 people. Sean Hepburn Ferrer knows first-hand about the challenges that all patients and families affected by rare diseases share. In addition to devastating medical problems and symptoms, it can take years for a patient to get a proper diagnosis. Furthermore, research to find treatments for rare diseases is slower and more difficult.

Rare Disease Day is celebrated worldwide on February 28th to inspire widespread recognition of the challenges faced by people living with rare diseases.  Sean wants to use this opportunity to remind patients and their caregivers that they are not alone, to empower them as patient advocates and make them aware of resources available through NORD.  Rare Disease Day – for which Sean Ferrer now serves as an international spokesperson – takes place each year on the last day of February and is observed in more than 80 nations worldwide.NORD is the official U.S. sponsor of Rare Disease Day, and offers resources on rarediseaseday.us.  NORD President & CEO Peter Saltonstall will join Sean in the interviews.