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Aug. 12, 2015

TOPIC: Featured News


Posted by Jennifer Huron
For Website 2

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.

3 Responses to “New NORD PSA”

  1. Susan Steinhardt says:

    I’m just learning of your organization and I am thrilled that you exist. I know a young man with DiGeorge Syndrome. I’ve recently been introduced to the area of Neuroplasticity and I’m wondering if any research has begun with people, young and adults, and what results have come out of this research. All the best to you and to this wonderful organization. I will be in Florida (I live in NYC) February 29th. Is this day of awareness national? Are there events planned in the Ft Lauderdale area? Thanks to all your good work.

  2. Diane Ashton says:

    As a 10 year survivor of a rare cancer, the same that claimed Audrey Hepburn’s life, a heartfelt “Thank You” to Sean Hepburn Ferrer. I’m very appreciative of the PSA that he’s presented and his involvement with NORD. Together we are strong!
    Diane Ashton

  3. Thank you, Mr. Ferrer, for continuing your mother’s legacy of helping others, especially those with a rare disease. This PSA is a loving tribute as well as a boost to public awareness about we are all affected, one way or another, by rare diseases.

    I look forward to reading your book about your friend, Mauricio Saravia.