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Latest National Organization for Rare Disorders Stories

2011-05-23 09:00:00

WASHINGTON, May 23, 2011 /PRNewswire-USNewswire/ -- To better serve the nearly 30 million Americans who have rare diseases, the National Organization for Rare Disorders (NORD) has launched a completely redesigned website with new features to promote global networking, awareness, and advocacy on behalf of the rare disease patient community. The new site, at www.rarediseases.org, was designed with particular emphasis on enhancing NORD's ability to assist and partner with: rare disease...

2011-05-17 18:00:00

KING OF PRUSSIA, Pa., May 17, 2011 /PRNewswire/ -- CSL Behring, a global biotherapeutics company specializing in plasma-derived and recombinant therapies and a subsidiary of CSL Limited (ASX: CSL), is a recipient of the National Organization for Rare Disorders (NORD) 2011 Corporate Award. The award was presented this evening at the NORD Partners in Progress Celebration 2011 for "new treatments brought to market for patients with rare diseases." (Logo:...

2011-04-14 11:29:00

Event to Highlight Progress in Research, Advocacy and New Treatments WASHINGTON, April 14, 2011 /PRNewswire-USNewswire/ -- The National Organization for Rare Disorders (NORD) will honor two members of the U.S. Congress, patient advocates, medical researchers, and others for improving the lives of people with rare diseases on Tuesday, May 17, at the Andrew W. Mellon Auditorium. The awards will be presented at the annual NORD Partners in Progress Celebration. Each year, NORD--a nonprofit...

2011-02-22 14:47:00

WASHINGTON, Feb. 22, 2011 /PRNewswire-USNewswire/ -- A coalition of more than 500 U.S. patient organizations, medical societies, government agencies, and companies will join the National Organization for Rare Disorders (NORD) in observing Rare Disease Day on Monday, Feb. 28. At the same time, corresponding groups around the globe will be doing the same thing. "People with rare diseases remain a medically underserved population," said NORD President and CEO Peter L. Saltonstall. "Studies...

2011-01-21 13:22:00

WASHINGTON, Jan. 21, 2011 /PRNewswire-USNewswire/ -- Food and Drug Commissioner Dr. Margaret Hamburg today conducted an unusual one-on-one dialogue with leaders of approximately 60 patient organizations at a forum hosted by the National Organization for Rare Disorders (NORD). NORD organized the meeting so that Dr. Hamburg could share with the patient advocates her vision for FDA and hear directly from them their hopes, needs, and concerns. "I come today to ask for your help, your...

2010-07-21 12:30:00

WASHINGTON, July 21 /PRNewswire-USNewswire/ -- An advocate for people with rare diseases today told a U.S. Senate committee that the burden of funding and driving research on rare diseases too often falls upon patients and their families. "As a society, it is wrong for us to expect people with devastating diseases to fund the search for their treatments," said Diane Dorman, vice president for public policy of the National Organization for Rare Disorders (NORD). "There are nearly 7,000...

2010-06-29 13:48:00

WASHINGTON, June 29 /PRNewswire-USNewswire/ -- Noting that only about 200 of the nearly 7,000 diseases classified as rare currently have treatments, the National Organization for Rare Disorders (NORD) today called for a Food and Drug Administration (FDA) statement of policy on regulation of therapies for rare disorders. NORD also urged FDA to work with the research community to reduce regulatory uncertainty in the development of medicines for rare disorders. "There are still about 5,800...

2010-06-18 13:23:00

NORD and other leading patient advocacy groups file amicus brief opposing frivolous lawsuits that could undermine the new legislation's protections against insurances abuses. WASHINGTON, June 18 /PRNewswire-USNewswire/ -- The National Organization for Rare Disorders (NORD) and other leading disease and disabilities advocacy groups have filed an amicus brief urging the courts to protect Americans from lawsuits that would undermine protections provided by the nation's new health care reform...

2010-05-19 10:55:00

CAMBRIDGE, Massachusetts, May 19, 2010 /PRNewswire-FirstCall/ -- Shire plc (LSE: SHP, NASDAQ: SHPGY), the global specialty biopharmaceutical company, today announced that it has received the 2010 Partners in Progress Corporate Award from NORD. Shire was recognized for its efforts to accelerate the development of VPRIV(TM), a human cell line derived enzyme replacement therapy (ERT) for the treatment of Type 1 Gaucher disease, and provide the therapy to patients ahead of commercial approval...

2010-02-25 15:49:00

NOVATO, Calif., Feb. 25 /PRNewswire-FirstCall/ -- BioMarin Pharmaceutical Inc. (Nasdaq: BMRN) announced today that it has partnered with industry and patient advocacy organizations in an international effort to raise awareness of rare diseases which affect nearly 30 million Americans and millions of others around the world. As part of this program, the company hosted a special event today at its Novato headquarters to honor patients and reaffirm its commitment to developing much-needed...


Word of the Day
siliqua
  • A Roman unit of weight, 1⁄1728 of a pound.
  • A weight of four grains used in weighing gold and precious stones; a carat.
  • In anatomy, a formation suggesting a husk or pod.
  • The lowest unit in the Roman coinage, the twenty-fourth part of a solidus.
  • A coin of base silver of the Gothic and Lombard kings of Italy.
'Siliqua' comes from a Latin word meaning 'a pod.'
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