Audrey Hepburn - an Icon for Rare Disease Advocacy

EURORDIS-Rare Diseases Europe bestows posthumous honor on the actress and humanitarian; Hepburn’s son is an advocate for rare disease patients.

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Audrey Hepburn by Steven Meisel
                                                                                                       Photo by Steven Meisel

Every day in February, we’re sharing content about rare diseases in anticipation of Rare Disease Day on the last day of the month. Today, we're explaining a little-known connection between movie legend Audrey Hepburn and the rare disease community.

Audrey Hepburn shimmered with beauty and grace on screen, which made her an enduring icon. She won an Oscar in 1954, received a star on Hollywood’s Walk of Fame and KLM Royal Dutch Airlines even named a jet after her.

But then the actress, born in Belgium, took on a second career as an advocate for poor children. She was a UNICEF Goodwill Ambassador for five years and received the U.S. Presidential Medal of Freedom from then-President George H. W. Bush. Hepburn, who lived much of her life in Switzerland, died of a rare form of cancer in 1993.

EURORDIS-Rare Diseases Europe recently named Hepburn as an Honorary Patron of the organization, which represents rare disease patients in Europe, of which there are an estimated 30 million and an estimated 300-400 million in the world. Sean Hepburn Ferrer, Hepburn’s oldest son, has been a longtime advocate for EURORDIS and pledged the profits from a new traveling exhibit “Intimate Audrey” to the organization. The exhibit, so far presented by Ferrer in Brussels and Amsterdam, includes memorabilia and previously unpublished photographs.

Ferrer has served as an ambassador for Rare Disease Day, an event founded by EURORDIS, which will be observed on February 29 this year. He said his family knows well the feelings of isolation and the “diagnostic odyssey” shared by patients and their caregivers.

“As a family, we had to deal with a long and difficult diagnosis and the loneliness that comes when a rare disease is diagnosed,” Ferrer said in a press release. “During my Ambassadorship of Rare Disease Day, I have been astounded by the realization that no matter what the rare disease, the challenges for patients and their carers are often very similar … My mother would be honored by such an appointment.”