Sean Hepburn Ferrer Partners with NORD and EURORDIS to Help People Living with Rare Diseases
Son of Actress Audrey Hepburn Donates Proceeds from New Book and Serves as Rare Disease Day® Ambassador 2015 on February 28
WASHINGTON, Feb. 18, 2015 /PRNewswire-USNewswire/ -- Actress Audrey Hepburn died of a rare type of cancer and it was the way she lived her life that inspired her son, Sean Hepburn Ferrer, to become an advocate for all people with rare diseases.
"My mother believed strongly that every life matters," Ferrer says. "She demonstrated on a daily basis, particularly through her humanitarian work as a Goodwill Ambassador for UNICEF, her strong belief in the value of every life."
As part of this effort, Ferrer is an advocate for the National Organization for Rare Disorders (NORD), a leading independent, nonprofit organization committed to the identification, treatment, and cure of rare diseases in the U.S., and its European counterpart, EURORDIS. He serves as Rare Disease Day® Ambassador 2015, an international awareness raising event that will be celebrated on February 28.
Ferrer will donate proceeds from his new children's book, MAURICIO OF URUGUAY, to NORD and EURORDIS. The book tells the life story of Ferrer's friend, Mauricio Saravia, an artist, poet and musician who lived a full and deeply impactful life and who had a rare genetic disease known as McCune-Albright syndrome. Born in Montevideo in 1970, he had his first art exhibition at age 20 and published his first book of poetry at age 21. He died in Hollywood when he was just 38 years old but, through his art and life, touched many lives.
McCune-Albright syndrome is an extremely rare disorder involving the bones, skin and endocrine system. The bones of those affected may be abnormally fragile, and the condition may include skeletal deformities, which can lead to an abnormal appearance.
Though Mauricio's life was short, his impact on those who came to know him was intense and inspiring, Ferrer says. Ferrer wrote the book because he felt so moved by Saravia's spirit and life, and he wanted to convey a message of hope to all.
Ferrer added, "The book will help people celebrate and understand rare diseases and teach children who have friends, or who themselves have a rare disease, that life must be lived to the fullest."
The book includes 86 illustrations by Justin J. Greene. Saravia's sister, Loli, has created a website on Lulu.com where the book may be purchased.
Sean Ferrer attended NORD's Portraits of Courage Gala in Washington, D.C. in May 2014 and spoke about his family's experience with a rare disease.
Audrey Hepburn was diagnosed in November of 1992 with an extremely rare form of appendiceal cancer known as pseudomyxoma peritonei (PMP). She died just three months later.
Rare Disease Day is an awareness raising event that takes place each year on the last day of February and is observed in more than 80 nations worldwide. It was started by EURORDIS in Europe in 2008. The following year, EURORDIS asked NORD to launch it in the U.S.
For more information about Rare Disease Day, NORD hosts the national website for Rare Disease Day in the U.S. at www.rarediseaseday.us. EURORDIS hosts an international website at www.rarediseaseday.org with news about Rare Disease Day activities worldwide.
To purchase copies of MAURICIO OF URUGUAY: http://www.lulu.com/shop/sean-ferrer/mauricio-of-uruguay-nord/paperback/product-21909802.html
Download NORD's free Rare Disease Database report on McCune-Albright Syndrome here: http://www.rarediseases.org/rare-disease-information/rare-diseases/byID/183/viewAbstract
Learn more about McCune-Albright Syndrome from the Fibrous Dysplasia Foundation, which is a member of NORD, visit http://www.fibrousdysplasia.org/
Download NORD's free Rare Disease Database report on Pseudomyxoma Peritonei (PMP): http://www.rarediseases.org/rare-disease-information/rare-diseases/byID/843/viewAbstract
Learn more about PMP from the PMP Research Foundation, which is a member of NORD, visit http://www.pmpcure.org/.
About NORD
Established in 1983, the National Organization for Rare Disorders (NORD) is the primary nonprofit organization representing all patients and families affected by rare diseases in the U.S. It provides programs of advocacy, education, research and patient/family services to improve the lives of all people living with rare diseases. NORD represents more than 200 disease-specific member organizations and partners with many other organizations in specific causes of importance to the rare disease patient community. Follow NORD at www.rarediseases.org/ and on Twitter at @RareDiseases.
About EURORDIS
EURORDIS, the European Organisation for Rare Diseases, is a non-governmental patient-driven alliance of patient organisations representing over 600 rare disease patient organisations in more than 60 countries. EURORDIS represents the voice of an estimated 30 million people living with a rare disease in Europe. Follow @eurordis or see the EURORDIS Facebook page. For more information visit: www.eurordis.org.
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SOURCE National Organization for Rare Disorders (NORD)
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