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.

May 04, 2015, 08:36 ET
National Organization for Rare Disorders (NORD) logo.

Foundation for Prader-Willi Research and NORD Launch Global Prader-Willi Syndrome Registry to Accelerate Research and Cures

 The Foundation for Prader-Willi Research (FPWR) and National Organization for Rare Disorders (NORD)® today launched the Global...

Apr 10, 2015, 08:30 ET
National Organization for Rare Disorders (NORD) logo

National Organization for Rare Disorders (NORD)® to Honor Rare Disease Patients, Leaders and Innovators at 2015 Portraits of Courage Gala on May 19

 On May 19, the National Organization for Rare Disorders (NORD)®, the nation's leading nonprofit organization dedicated to helping...

Apr 08, 2015, 09:05 ET
National Organization for Rare Disorders (NORD) logo.

Cortendo AB Joins National Organization for Rare Disorders (NORD)® Corporate Council

 Cortendo AB (publ) [ticker: CORT on NOTC-A], a global biopharmaceutical company focused on rare endocrine disorders and other rare...

Feb 18, 2015, 12:20 ET
Sean Hepburn Ferrer with mother, Audrey Hepburn

Sean Hepburn Ferrer Partners with NORD and EURORDIS to Help People Living with Rare Diseases

Actress Audrey Hepburn died of a rare type of cancer and it was the way she lived her life that inspired her son, Sean Hepburn Ferrer, to become an...

Feb 13, 2015, 14:48 ET
Thirty million Americans--1 in 10 people--have a rare disease.  Show your support and get involved on Rare Disease Day (Feb. 28, 2015) and join the conversation at #1in10, #RDD2015 and #RareDiseaseDay.

NORD Announces #1in10 Campaign to Raise Awareness for Rare Disease Day® on February 28

The National Organization for Rare Disorders (NORD)®, a leading independent, non-profit organization committed to the identification,...

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
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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
National Organization for Rare Disorders (NORD) logo.  (PRNewsFoto/National Organization for Rare Disorders (NORD))

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,...