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Latest National Organization for Rare Disorders Stories

2014-08-13 08:29:24

WASHINGTON, Aug. 13, 2014 /PRNewswire/ -- The National Organization for Rare Disorders (NORD) today announced the agenda for the Rare Diseases and Orphan Product Breakthrough Summit, to be held October 21-22, 2014 at the Hilton Mark Center in Alexandria, VA. Photo - http://photos.prnewswire.com/prnh/20140812/135518 This annual event is the innovative hub for all stakeholders in the rare disease and orphan products community - providing an educational platform for pharmaceutical, biotech,...

2014-06-04 08:33:48

WASHINGTON, June 4, 2014 /PRNewswire-USNewswire/ -- In a letter submitted today to the U.S. Food and Drug Administration (FDA), the National Organization for Rare Disorders (NORD) urged Commissioner Margaret Hamburg to give serious consideration to the concerns of the rare disease community when setting policy regarding official names for biologics, including biosimilars. With over 7,000 rare diseases identified and 30 million Americans affected, the patient population represented by NORD is...

2014-05-09 12:26:33

WASHINGTON, May 9, 2014 /PRNewswire-USNewswire/ -- The National Organization for Rare Disorders (NORD) focused a spotlight on individuals and families who display great courage as they live with rare diseases at its Portraits of Courage Celebration last night. http://photos.prnewswire.com/prnvar/20140509/86217 During the program, Brooke and Brielle Kennedy of Michigan, ages 5 and 6, who have a rare disease known as spinal muscular atrophy, put a medal around the neck of Representative Fred...

2014-05-09 08:26:43

WHIPPANY, N.J., May 9, 2014 /PRNewswire/ -- Bayer HealthCare was honored by the National Organization for Rare Disorders (NORD) at their annual "Portraits of Courage" Celebration in Washington, DC on May 8. The event recognized several individuals, foundations and innovator companies that have made substantial contributions to improving the lives of people affected by rare disorders. NORD's celebration of progress is an annual event open to everyone with an interest in rare...

2014-05-08 23:02:12

Pulmonary Hypertension Association (PHA) founders and sisters Pat Paton and Judy Simpson will be featured at the National Organization for Rare Disorders’ (NORD) Portraits of Courage Gala tonight in Washington, D.C. NORD will be featuring 20 people living with rare diseases who display great courage in their experiences with very challenging diseases. Silver Spring, MD (PRWEB) May 08, 2014 Pulmonary Hypertension Association (PHA) founders, and sisters, Pat Paton and Judy Simpson will be...

2014-04-04 12:27:44

NORD to Present Awards at "Portraits of Courage" Celebration on May 8th in Washington, DC WASHINGTON, April 4, 2014 /PRNewswire-USNewswire/ -- Rare disease patient advocates, two members of Congress and companies that have brought novel new therapies to patients will be honored at the "Portraits of Courage Celebration" of the National Organization for Rare Disorders (NORD) on Thursday, May 8, at the National Building Museum in Washington, DC....

2014-02-28 12:27:25

WHIPPANY, N.J., Feb. 28, 2014 /PRNewswire/ -- Bayer HealthCare is joining the National Organization for Rare Disorders (NORD) and others in raising awareness of Rare Disease Day, which is being celebrated today around the world. (Photo: http://photos.prnewswire.com/prnh/20140228/NY74321 ) Rare Disease Day 2014 activities by Bayer will include participation in state government awareness events and employee engagement via the NORD "Handprints Across America" photo gallery. "While...

2014-02-24 12:27:14

MIDLOTHIAN, Va., Feb. 24, 2014 /PRNewswire-USNewswire/ -- Patient Services, Inc. (PSI) will be joining the National Organization for Rare Disorders (NORD) and others around the world in observing Rare Disease Day on February 28, 2014. On this day, millions of patients and their families will share their stories to focus a spotlight on rare diseases as a global public health concern. http://photos.prnewswire.com/prnvar/20140224/DC70603LOGO "Everyone knows someone with a rare...

2013-10-02 23:01:39

Despite federal incentives for drug companies to create treatments for rare diseases, thousands of people are still searching for lifesaving therapies. In many cases, patients and those working on their behalf are taking matters into their own hands. Bethesda, MD (PRWEB) October 02, 2013 Katheryn Elibri, whose 7-year-old daughter has a rare genetic disease known as CDKL5 and has seizures almost daily, helped begin a foundation to fund research for a cure. Other parents—like Lisa Schill,...


Word of the Day
omphalos
  • The navel or umbilicus.
  • In Greek archaeology: A central boss, as on a shield, a bowl, etc.
  • A sacred stone in the temple of Apollo at Delphi, believed by the Greeks to mark the 'navel' or exact center-point of the earth.
'Omphalos' comes from the ancient Greek.
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