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. Articles that appear in this section may be written in English or other languages, as well.

Jun 04, 2014, 09:25 ET

NORD Urges FDA To Consider Rare Disease Treatment Implications When Setting Biologics Naming Policy

 In a letter submitted today to the U.S. Food and Drug Administration (FDA), the National Organization for Rare Disorders (NORD) urged...

May 09, 2014, 12:06 ET
Children with rare disease present award to Representative Fred Upton (MI) at NORD "Portraits of Courage" Celebration. (PRNewsFoto/NORD)

NORD Hosts "Portraits of Courage" Celebration

The National Organization for Rare Disorders (NORD) focused a spotlight on individuals and families who display great courage as they live with...

Apr 04, 2014, 12:24 ET
National Organization for Rare Disorders (NORD) logo.  (PRNewsFoto/National Organization for Rare Disorders (NORD))

National Organization for Rare Disorders to Honor Two Members of Congress, Patient Advocates and Orphan Product Innovators

Rare disease patient advocates, two members of Congress and companies that have brought novel new therapies to patients will be honored at the...

Sep 18, 2013, 08:00 ET
National Organization for Rare Disorders (NORD) logo.  (PRNewsFoto/National Organization for Rare Disorders (NORD))

Deputy HHS Secretary, Investors and Entrepreneurs to Share Their Vision of Upcoming New Era in Health Care

How Will the Affordable Care Act, Globalization and Current Market Trends Affect Development of Therapies for People with Rare Diseases? One...

Sep 10, 2013, 14:16 ET
National Organization for Rare Disorders (NORD) logo.  (PRNewsFoto/National Organization for Rare Disorders (NORD))

Study Finds That Bill to Protect Patient Access to Medically Necessary Treatments Would Have Negligible Impact on Insurance Premiums

Coalition of patient advocates and medical professionals commissions study of H.R. 460 A bill to protect access to medically necessary...

Sep 05, 2013, 09:00 ET
National Organization for Rare Disorders (NORD) logo.  (PRNewsFoto/National Organization for Rare Disorders (NORD))

NORD Publishes New Online Physician's Guide to Gaucher Disease

Guides are produced by NORD to promote earlier diagnosis and treatment for patients The National Organization for Rare Disorders (NORD) has...

Aug 07, 2013, 11:08 ET
Connecticut Boy and NORD Alert Physicians to Rare Seizure Disorder.  (PRNewsFoto/National Organization for Rare Disorders (NORD))

Connecticut Boy and NORD Alert Physicians to Rare Seizure Disorder

Seeking to Protect Infants and Children from Lifelong Neurological Impairment A 14-year-old Connecticut boy has joined the National...

May 10, 2013, 12:24 ET
National Organization for Rare Disorders (NORD) logo.  (PRNewsFoto/National Organization for Rare Disorders (NORD))

National Organization for Rare Disorders to Celebrate 30 Years of Achievement and Promote a Promising Future for the Rare Disease Community

The 30th Anniversary Gala of the National Organization for Rare Disorders (NORD), to be held Tuesday, May 14, 2013, will honor rare disease...

Apr 05, 2013, 10:47 ET

NORD To Honor Rare Disease Heroes At 30th Anniversary Celebration

Momentous Event to Highlight Historic Past, Promising Future Honoring heroes of the past and innovators of the future, the National...

Feb 26, 2013, 13:16 ET

As Rare Disease Day Approaches, Patient Advocates Celebrate 30 Years of Collaboration But Worry About Looming Budget Cuts

On 30th Anniversary of Orphan Drug Act and NORD, Rare Disease Patient Advocates Fear That Budget Cuts for NIH and FDA Will Slow Momentum On...

Jan 29, 2013, 09:00 ET
National Organization for Rare Disorders (NORD) logo.  (PRNewsFoto/National Organization for Rare Disorders (NORD))

Leading Patient Organizations Establish Partnership to Improve the Lives of Tens of Millions of Rare Disease Patients in Japan and the U.S.

Japan Patients Association (JPA) and National Organization for Rare Disorders (NORD) to Collaborate Toward New Treatments and Improved Policies...

Jan 04, 2013, 08:26 ET
National Organization for Rare Disorders (NORD) logo.  (PRNewsFoto/National Organization for Rare Disorders (NORD))

For Orphan Drug Act and NORD: A Day to Remember and Celebrate

Rare Disease Patient Advocates Celebrate 30th Anniversary Today  Thirty years ago today, President Ronald Reagan signed the Orphan...

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...

Dec 11, 2012, 14:51 ET
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NORD Launches Campaign to Educate State Legislators About Challenges of Living With Rare Diseases

Patient Advocates and Supporters to Host State House Events for Rare Disease Day 2013 The National Organization for Rare Disorders (NORD)...

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

Compassionate Allowances Program Provides Expedited Disability Review for Patients with Severely Disabling Diseases Peter L. Saltonstall,...

Dec 03, 2012, 14:16 ET
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FDA, Medical Device Industry and NORD Announce New Public-Private Partnership

First-ever PPP Created to Focus Exclusively on Advancing Medical Device Regulatory Science Senators Amy Klobuchar and Al Franken joined Food...

Oct 03, 2012, 16:28 ET
National Organization for Rare Disorders (NORD) logo.  (PRNewsFoto/National Organization for Rare Disorders (NORD))

Can Our Society Afford to Provide Treatments for People with Rare Diseases?

A Medical Adviser to the National Organization for Rare Disorders (NORD) Responds to this Question Can our society afford to provide...

Sep 28, 2012, 12:22 ET
National Organization for Rare Disorders (NORD) logo.  (PRNewsFoto/National Organization for Rare Disorders (NORD))

Experts From Government, Industry, Patient Advocacy to Speak at U.S. Conference on Rare Diseases and Orphan Products

"Shaping the Future Now" is Theme; Speakers will Address Current Political and Economic Climate  Patient advocates, industry leaders,...

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

Guidelines Emphasize Respecting the Values and Independence of Patient Organizations The National Organization for Rare Disorders (NORD)...

Jul 09, 2012, 18:10 ET
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FDA Safety and Innovation Act Signed - A Monumental Step Toward the Development of Safe and Effective Treatments for Millions of Americans With Rare Diseases

Approval Culminates Years of Advocacy, Education and Relationship Building Led by NORD Signed by President Obama today, the U.S. Food and...