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Latest National Organization for Rare Disorders Stories

2009-07-31 14:49:00

DANBURY, Conn., July 31 /PRNewswire-USNewswire/ -- The following letter regarding health care reform was sent to all members of Congress today by the National Organization for Rare Disorders (NORD): July 31, 2009 Dear Member of Congress: On behalf of the 30 million Americans who are affected by one of the nearly 7,000 rare disorders, we urge you to pass comprehensive health reform legislation designed to assure that every American, regardless of health status, has access to affordable,...

2009-05-18 09:50:00

EXTON, Pa., May 18 /PRNewswire-FirstCall/ -- ViroPharma Incorporated (Nasdaq: VPHM) was honored with a Corporate Award at the National Organization for Rare Disorders (NORD) Annual Gala for its work in bringing Cinryze(TM) (C1 esterase inhibitor (human)) to market for a rare and devastating disorder -- hereditary angioedema (HAE). HAE is a rare, severely debilitating, life-threatening genetic disorder caused by a deficiency of C1 inhibitor, a human plasma protein.

2009-05-15 08:00:00

National Organization for Rare Disorders (NORD) Recognizes BioMarin's Efforts to Expand Treatment Options for Patients with PKU NOVATO, Calif., May 15 /PRNewswire-FirstCall/ -- BioMarin Pharmaceutical Inc.

2009-05-14 17:06:00

WASHINGTON, May 14 /PRNewswire-USNewswire/ -- A shortage of new pharmaceutical products in the pipeline combined with new scientific tools has created a climate of opportunity for the rare disease community, a senior Food and Drug Administration (FDA) official said today at a conference hosted by the National Organization for Rare Disorders (NORD). The blockbuster model is no longer viable, said Janet Woodcock, MD, director of the Center for Drug Evaluation and Research at FDA.

2009-05-11 16:02:00

DANBURY, Conn., May 11 /PRNewswire-USNewswire/ -- The National Organization for Rare Disorders (NORD) will honor a senior U.S.

2009-02-13 11:30:00

DANBURY, Conn., Feb.

2009-02-09 06:00:00

- NORD Names Discovery Health Media Partner and MYSTERY DIAGNOSIS Program Partner for First Rare Disease Day in U.S. on February 28, 2009 - - MYSTERY DIAGNOSIS Airs Mondays at 10PM ET/PT on Discovery Health - DANBURY, Conn., Feb.

2008-11-13 09:00:37

The payer climate for coverage and access of new rare disease treatments is becoming increasingly challenging.


Word of the Day
ecotone
  • A transitional zone between two communities containing the characteristic species of each.
The word 'ecotone' comes 'eco-' plus a Greek root meaning 'tension'.