News from national organization for rare disorders (nord) A wide array of domestic and global news stories; news topics include politics/government, business, technology, religion, sports/entertainment, science/nature, and health/lifestyle.

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Jan 29, 2013, 09:00 ET Leading Patient Organizations Establish Partnership to Improve the Lives of Tens of Millions of Rare Disease Patients in Japan and the U.S.

The Japan Patients Association (JPA) and the National Organization for Rare Disorders (NORD)—the primary organizations representing patients and...


Jan 04, 2013, 08:26 ET For Orphan Drug Act and NORD: A Day to Remember and Celebrate

Thirty years ago today, President Ronald Reagan signed the Orphan Drug Act into law to encourage the development of treatments for the millions of...


Dec 25, 2012, 11:42 ET The National Organization for Rare Disorders (NORD) Issues Statement on Death of Actor Jack Klugman:

Jack Klugman touched the lives of millions of Americans through his support for what ultimately became the Orphan Drug Act. By portraying on his...


Dec 11, 2012, 02:51 ET NORD Launches Campaign to Educate State Legislators About Challenges of Living With Rare Diseases

The National Organization for Rare Disorders (NORD) has launched a nationwide campaign to help leaders of rare disease patient organizations – and...


Dec 06, 2012, 11:58 ET NORD Praises SSA for Expanding Program to Help People with Devastating Diseases

Peter L. Saltonstall, president and CEO of the National Organization for Rare Disorders (NORD), today praised Social Security Commissioner Michael...


Dec 03, 2012, 02:16 ET FDA, Medical Device Industry and NORD Announce New Public-Private Partnership

Senators Amy Klobuchar and Al Franken joined Food and Drug Commissioner Margaret Hamburg, MD, NORD President Peter L. Saltonstall and others today in ...


Oct 03, 2012, 04:28 ET Can Our Society Afford to Provide Treatments for People with Rare Diseases?

Can our society afford to provide costly medical care for patients with rare diseases, or would that money better be spent on treatments for more...


Sep 28, 2012, 12:22 ET Experts From Government, Industry, Patient Advocacy to Speak at U.S. Conference on Rare Diseases and Orphan Products

Patient advocates, industry leaders, medical researchers, government professionals and investors will address together "Shaping the Future Now" at...


Sep 28, 2012, 09:05 ET NORD Commends PhRMA for Adopting Principles for Interaction With Patient Organizations

The National Organization for Rare Disorders (NORD) today issued a statement commending the Pharmaceutical Research and Manufacturers of America...


Jul 09, 2012, 06:10 ET FDA Safety and Innovation Act Signed - A Monumental Step Toward the Development of Safe and Effective Treatments for Millions of Americans With Rare Diseases

Signed by President Obama today, the U.S. Food and Drug Administration (FDA) Safety and Innovation Act includes the most groundbreaking measures for...


Jun 26, 2012, 07:52 ET Bill Offers New Hope to Rare Disease Patients, NORD Says

Millions of Americans who have serious rare diseases and no treatment may face a brighter future as a result of a bill approved today by the U.S....


May 24, 2012, 04:52 ET NORD Calls Senate Bill Most Important Since Orphan Drug Act

The National Organization for Rare Disorders (NORD) applauds legislation passed today by the U.S. Senate -- S 3187, the Food and Drug Administration...


May 15, 2012, 03:57 ET NORD Forum Speaker: Bills Hold Major Promise for Rare Disease Patients

The House and Senate versions of "PDUFA V" are on track for timely congressional approval and represent the most significant legislative advances for ...


Apr 12, 2012, 11:36 ET NORD Applauds SSA for Expanding Compassionate Allowances List

Peter L. Saltonstall, president and CEO of the National Organization for Rare Disorders (NORD), today thanked the Social Security Administration...


Feb 15, 2012, 05:07 ET NORD Supports TREAT Act Introduced Today by Senator Hagan

The National Organization for Rare Disorders (NORD) supports proposed legislation introduced today by U.S. Senator Kay Hagan (NC) intended to...


Oct 11, 2011, 06:00 ET Landmark NORD Study Concludes FDA is Flexible in Reviewing Therapies for Rare Diseases

The National Organization for Rare Disorders (NORD) today released a landmark report documenting flexibility in the Food and Drug Administration...


Jul 19, 2011, 12:04 ET Timothy Cote, MD, MPH, Joins NORD as Chief Medical Officer

Timothy R. Cote, MD, MPH, has joined the National Organization for Rare Disorders (NORD) as Chief Medical Officer. Cote was formerly Director of the...


Jul 14, 2011, 02:33 ET NORD Applauds SSA for Expanding "Compassionate Allowances"

The president of the National Organization for Rare Disorders (NORD) today praised the Social Security Administration's "Compassionate Allowances"...


May 23, 2011, 10:00 ET New Website Promotes Rare Disease Patient Networking

To better serve the nearly 30 million Americans who have rare diseases, the National Organization for Rare Disorders (NORD) has launched a completely ...


Apr 14, 2011, 12:29 ET NORD to Honor Rare Disease Innovators

The National Organization for Rare Disorders (NORD) will honor two members of the U.S. Congress, patient advocates, medical researchers, and others...


Jan 21, 2011, 02:22 ET NORD Hosts Forum for FDA Commissioner and Patient Leaders

Food and Drug Commissioner Dr. Margaret Hamburg today conducted an unusual one-on-one dialogue with leaders of approximately 60 patient organizations ...


Jul 21, 2010, 01:30 ET NORD Tells Senate Parents Shouldn’t Bear Burden of Seeking Children’s Cures

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...


Jun 29, 2010, 02:48 ET NORD Calls for Statement of Policy on Orphan Drug Development

Noting that only about 200 of the nearly 7,000 diseases classified as rare currently have treatments, the National Organization for Rare Disorders...


Jun 18, 2010, 02:23 ET Advocacy Groups to Courts: Don't Let Health Reform Become an Empty Promise

The National Organization for Rare Disorders (NORD) and other leading disease and disabilities advocacy groups have filed an amicus brief urging the...


May 11, 2010, 02:05 ET NORD to Honor Rare Disease Innovators

The National Organization for Rare Disorders (NORD) will honor two trailblazing scientists, a pioneering patient organization, and five companies...