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.
WASHINGTON D.C.—March 5, 2015—The following statement was issued today by Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD)®, a leading independent, nonprofit organization committed to the identification, treatment, and cure of rare diseases, following the announcement that Harold Varmus, MD, will step down as Director of the National Cancer Institute.
Harold Varmus has provided outstanding leadership to the National Cancer Institute for the past five years. Cancers increasingly are being categorized as rare diseases and many of the new drugs approved by the FDA in recent years have been for “rare” cancers. Dr. Varmus has long been a leader in researching new cancer therapies and we hope to continue to work with him in his new post at the Weill-Cornell Medical Center in New York. On behalf of the rare disease patient community, I thank him for his career-long leadership in studying the causes of cancer and in advancing research for new cancer treatments.
Peter L. Saltonstall
President and CEO, National Organization for Rare Disorders (NORD)
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.
We recently participated in Mediaplanet’s Blood Health campaign where we joined many industry leaders to raise awareness about disease, cancer, and blood health issues, bringing these concerns to the forefront of priority that go beyond diagnostics and into a world of hard-hitting advocacy, research, and innovative solutions and treatments. The campaign is distributed in USA Today, starting today (Feb. 27), and it is published online. Visit the site to learn 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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