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Latest National Organization for Rare Disorders Stories

2010-02-25 15:09:00

WASHINGTON, Feb. 25 /PRNewswire-USNewswire/ -- Peter L. Saltonstall, president and CEO of the National Organization for Rare Disorders (NORD), today said the Food and Drug Administration's (FDA) announcement that it has created a new position--Associate Director for Rare Diseases--in the agency's Center for Drug Evaluation and Research's (CDER) Office of New Drugs (OND) represents an important advance for patients with rare diseases. "NORD asked FDA to create a new position within CDER to...

2010-02-23 09:44:00

DANBURY, Conn., Feb. 23 /PRNewswire-USNewswire/ -- A coalition of more than 300 U.S. patient organizations, medical societies, government agencies and companies will join the National Organization for Rare Disorders (NORD) in observing World Rare Disease Day on Sunday, 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....

2010-02-11 10:11:00

WASHINGTON, Feb. 11 /PRNewswire-USNewswire/ -- The National Organization for Rare Disorders (NORD) said today's announcement by the Social Security Administration (SSA) of expansion of the "Compassionate Allowances" program is extremely important to patients and families affected by rare diseases. "Since Michael Astrue became Social Security Administrator, he has provided strong leadership in addressing issues that were very difficult and discouraging for people with rare diseases," said...

2010-02-03 09:00:00

SILVER SPRING, Md. and Danbury, Conn., Feb. 3 /PRNewswire/ -- The National Organization for Rare Disorders (NORD) announced that Discovery Health and its new program, DISEASE DETECTIVES, will serve as media and program partners for Rare Disease Day on February 28, 2010. This year represents the second U.S. observance of Rare Disease Day, an event designed to call attention to the public health issues associated with rare diseases affecting nearly 30 million Americans and countless...

2010-02-01 09:00:00

SILVER SPRING, Md., Feb. 1 /PRNewswire/ -- More than 30 million Americans suffer from rare or undiagnosed medical disorders -- and for many, these mysterious conditions are life-threatening. When physicians and medical experts are left baffled, there is one last place to send the most puzzling and dire cases -- the Undiagnosed Disease Program (UDP) at the National Institutes for Health (NIH). On Sunday, February 28, at 8 PM (ET/PT), Discovery Health brings viewers inside the UDP for the...

2010-01-14 16:44:00

Advocacy groups warn that Senate version of bill would not eliminate caps for millions of Americans WASHINGTON, Jan. 14 /PRNewswire-USNewswire/ -- The National Organization for Rare Disorders and 34 other patient advocacy groups are warning that the Senate health care reform bill would not eliminate annual and lifetime insurance caps for many Americans, contrary to common belief. The groups say millions of people would still be vulnerable to loss of their insurance benefits if provisions...

2009-12-14 16:47:00

WASHINGTON, Dec. 14 /PRNewswire-USNewswire/ -- The National Organization for Rare Disorders (NORD) today called upon Congress to put an immediate end to lifetime and annual health insurance caps. In a full-page ad in The Politico, a newspaper distributed widely on Capitol Hill, NORD said the current Senate health reform bill includes loopholes that would allow caps to continue for most Americans, contrary to what many people believe. "NORD supports health care reform and welcomes the...

2009-12-09 07:00:00

CLAREMONT, Calif., Dec. 9 /PRNewswire/ -- The U.S. Food and Drug Administration (FDA) has announced the launch of an orphan drug workshop series--an opportunity for biotechnology companies, pharmaceutical firms, academics and other interested parties to spend two days creating applications for orphan status designation, under the guidance of staff from FDA's Office of Orphan Products Development (OOPD). The first workshop is planned for Feb. 25-26, 2010, hosted by the Center for Rare...

2009-11-19 15:28:00

WASHINGTON, Nov. 19 /PRNewswire-USNewswire/ -- The National Organization for Rare Disorders (NORD) sent the following letter today to all members of the Senate: Dear Majority Leader Reid: On behalf of the 150 member organizations of the National Organization for Rare Disorders (NORD) representing nearly 30 million patients and families afflicted with one of the 7,000 known rare diseases, we are writing to convey our strong support for passage of the Patient Protection and Affordable Care...

2009-10-01 09:44:00

DANBURY, Conn., Oct. 1 /PRNewswire-USNewswire/ -- The leading advocacy groups for Americans and Europeans with rare diseases -- the National Organization for Rare Disorders (NORD) and the European Organization for Rare Diseases (EURORDIS) -- have signed a Memorandum of Understanding to join forces on several key strategic initiatives on behalf of rare disease patients and their families. The intent is to increase global awareness, promote research and the development of new treatments,...


Word of the Day
callithump
  • A somewhat riotous parade, accompanied with the blowing of tin horns, and other discordant noises; also, a burlesque serenade; a charivari.
'Callithump' is a back-formation of 'callithumpian,' a 'fanciful formation' according to the Oxford English Dictionary. However, the English Dialect Dictionary, says 'Gallithumpians' is a Dorset and Devon word from the 1790s that refers to 'a society of radical social reformers' or 'noisy disturbers of elections and meetings.'
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