As part of Operation Wear Red (March 1-7, 2015) to raise awareness for the rare disease aplastic anemia, NORD staff are wearing red to join our member organizations Aplastic Anemia and MDS International Foundation and Julia’s Wings Foundation. Learn more about the campaign with this handout or by visiting http://aamds.org/node/3761. You can learn more about aplastic anemia in NORD’s Rare Disease Database, here.
Rare Disease Day is here! Celebrated on the last day of February–the rarest day on the calendar–this is the one day every year when the world comes together to improve the lives of people living with rare diseases.
NORD is proud to work with our partners as the official sponsor of Rare Disease Day in the U.S. Here are a few ways you can get involved to help make this the most impactful Rare Disease Day yet.
Social media awareness - Together we can grow awareness. Change your profile picture to the ”I SUPPORT Rare Disease Day” badge (pictured) and encourage others to do the same. Share photos, updates and videos using the hashtags #RDD2015, #RareDiseaseDay and #1in10. You can find us on Twitter @RareDayUS, Facebook /RareDiseaseDay.US and instagram @rarediseasedayUS.
Sophia Walker, a medical student and NORD volunteer, has written an op-ed piece on “The Importance of Rare Disease Education” that was published this afternoon on Medscape and is being promoted specifically to medical students.
The article is one of several currently being developed by NORD staff in collaboration with Medscape as part of NORD’s expanded outreach to medical professionals to promote earlier diagnosis and optimal treatment for patients.
A student at the University of Connecticut School of Medicine, Sophia became interested in rare diseases while in high school after hearing a NORD staff member speak.
On a related note, NORD representatives — and several rare disease patients — will participat in the American Medical Student Association annual convention this week in Arlington, Virginia. NORD will host a “Meet the Patients” event in its booth at the convention.
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 >
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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