The presentation will be webcast and can be viewed online at https://videocast.nih.gov/.
Son of Actress Audrey Hepburn Donates Proceeds from New Book and Serves as
Rare Disease Day® Ambassador 2015 on February 28
Washington D.C.—February 18, 2015—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. read more >
For the sixth year, we’re proudly partnering with the pharmaceutical company Lundbeck on the “Raise Your Hand to Fight Rare Diseases” campaign, which supports rare disease research in celebration of Rare Disease Day.
The campaign invites individuals to visit the Rare Disease Day U.S. website, http://rarediseaseday.us, and click on the “Raise Your Hand” icon during the month of February. Each unique click triggers Lundbeck to make a $1 donation to NORD’s research grant fund (up to a maximum donation of $10,000).
Rare Disease Day is an international awareness day held annually on the last day of February. NORD is proud to be the official U.S. sponsor for this important event. read more >
The bleeding disorders community will be recognizing Rare Disease Day on February 28, Hemophilia Awareness Month during the entire month of March, and World Hemophilia Day of April 17. These important dates were created to raise awareness and education about rare conditions like hemophilia and bleeding disorders.
NORD is thrilled to partner with our member organization, Hemophilia Federation of America, to raise awareness. HFA is offering shirts that say “I Am Rare. I Matter.” to help you raise awareness during these important upcoming community dates! Proceeds will be donated to HFA and NORD.
Don’t miss out, the limited edition shirts (available in grey and red, crew and v-neck) will only be available until Sunday, February 15. Order here: http://www.booster.com/rarediseaseday2015.
The National Organization for Rare Disorders (NORD)®, a leading independent, non-profit organization committed to theidentification, treatment, and cure of rare disorders and official U.S. sponsor of Rare Disease Day® on February 28, announces a new social media campaign, #1in10, to raise awareness for the 1 in 10 Americans living with a rare disease.
“It’s astounding that there are just as many Americans living with a rare disease as there are people who are left-handed,” said Lisa Phelps, director of marketing and community relations at NORD. “We are launching this campaign for everyone who has a rare disease, their families, caregivers, nurses and doctors to help raise important awareness for this major public health issue and the need for safe, new treatments.”
RareDisease Dialog is the official blog for the National Organization for Rare Disorders (NORD). NORD’s staff and friends will share information of interest to the entire rare disease community.
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