Latest National Organization for Rare Disorders Stories

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 others...

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...

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...

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...

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...

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...

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, and...

WASHINGTON, Sept. 14 /PRNewswire-USNewswire/ -- The following letter was sent today to all members of Congress by the National Organization for Rare Disorders (NORD): September 14, 2009 Dear Member of Congress: On behalf of the 30 million Americans who are affected by one of the nearly 7,000 rare disorders, the National Organization for Rare Disorders (NORD) urges you to pass comprehensive health reform legislation to assure that every American has access to affordable, meaningful health...

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,...

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. Patients with C1...