Rare Disease Day is Feb 28
February 28 is Rare Disease Day in the USA and throughout the world. Rare Disease Day® was first observed in Europe in 2008. It was established by EURORDIS, the European Rare Disease Organization. In 2009, EURORDIS asked the National Organization for Rare Disorders, the American organization based in Connecticut, be its partner in this initiative and to sponsor Rare Disease Day in the United States.
This year’s spokesperson for NORD is Sean Hepburn Ferrer, a philanthropist and humanitarian in his own right, carrying on the work of his famous mother Audrey Hepburn and his father Mel Ferrer. 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 become an advocate for all people with rare diseases.
“My mother believed strongly that every life matters,” Ferrer says. She demonstrated that belief on a daily basis, particularly through her humanitarian work as a Goodwill Ambassador for UNICEF, her strong belief in the value of every life, he says.
As a result, Ferrer is now an advocate for the National Organization for Rare Disorders (NORD) and its sister organization in Europe, EURORDIS. He is donating proceeds from a children’s book he has written to NORD and EURORDIS. And he serves as the international ambassador for Rare Disease Day, which was established by EURORDIS and is hosted in the U.S. by NORD.
The book – titled Mauricio of Uruguay – is about Ferrer’s friend, Mauricio Saravia, an artist, poet and musician who lived a full and deeply impactful life despite having a rare genetic disease known as McCune-Albright syndrome. Born in Montevideo in 1970, Mauricio 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 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.
Even though Mauricio’s life was short, his impact on those who came to know him was intense and inspiring, Ferrer says.
“Upon first meeting Mauricio, you might be thrown by his appearance. But you would quickly see beyond that. You would see a young man full of dreams and life and possibilities. He was a most extraordinary person,” says Ferrer.
Ferrer wrote the book simply because he felt so moved by Mauricio’s spirit and life, and he wanted to convey a message of hope to all. However, he found that children seemed especially moved by the story, and as a result, he now directs the book to readers “from the ages of 7 to 77.”
The book includes 86 illustrations done by Justin J. Greene. Mauricio’s sister, Loli, has created a website where the book may be purchased online, with proceeds divided between NORD and EURORDIS.
Sean Ferrer attended NORD’s Portraits of Courage Gala in Washington DC 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 – 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. It was started by EURORDIS in Europe in 2008. The following year, EURORDIS asked NORD to launch it in the U.S.
EURORDIS hosts an international website at www.rarediseaseday.org with news about Rare Disease Day activities worldwide. NORD hosts the national website for Rare Disease Day in the U.S. at www.rarediseaseday.us.
Copies of Sean Ferrer’s book, Mauricio of Uruguay, may be purchased here. 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. http://www.fibrousdysplasia.org/
Download NORD’s free Rare Disease Database report on Pseudomyxoma Peritonei (PMP) here. 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. http://www.pmpcure.org/
The concept has continued to expand beyond the US and Europe. In 2014, more than 80 countries participated and, through social media, the awareness and participation has an even broader reach. Each year, Rare Disease Day is observed on the last day of February (Feb. 29 in leap years and Feb. 28 in other years). The goal is to draw attention to rare diseases as an important public health issue that cannot be ignored. – See more at: http://rarediseaseday.us/about/history/#sthash.RDRKCP8g.dpuf