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Join NORD in Supporting Rare Disease Research

March 1 is the day automatic funding cuts could kick in. Write your letter today.  More >


NORD Supports Friends of Newborn Screening Initiative

NORD signed onto a letter calling for continued operation of the SACHDNC. More >


30th Anniversary of ODA and NORD

A coalition of patient advocates played a major role in getting the Orphan Drug Act enacted. More > View video of NORD founder Abbey Meyers shown at FDA event>


NORD and JPA Sign Agreement

NORD and the Japan Patients Association have signed a Memorandum of Understanding to collaborate to help patients. More>

News for Patients


Powerful Partnerships: A Handbook for Families and Providers Working Together to Improve Care

NICHQ has developed this handbook for family members and healthcare professionals who are working together to improve care for children. Access the handbook.


Happy 50th Birthday Newborn Screening

2013 is the 50th anniversary of newborn screening in the US. The Association of Public Health Laboratories produced a PSA on newborn screening that is currently being aired in Times Square in NYC.  Watch the video.


Tips for Making Medical Devices Safer at Home

The FDA is working to make medical devices safer to use, including helping consumers get access to clearer instructions. More >


Rare Disease Day 2013!

Information on all of the activities related to Rare Disease Day US is now available on the Rare Disease Day website. Learn more >

News for Patient Organizations


New Film on Newborn Bloodspots

Save Babies Through Screening Foundation has developed a new film that provides information about the process and benefits of newborn screening. More>


Canadian Organization for Rare Disorders Seeks Nominations for “Rarities” Awards

The CORD “Rarities” will be the first-ever Canadian awards honoring those who have made significant contributions to rare diseases in Canada. More >


Patient Network Newsletter

This bi-weekly newsletter provided by the FDA provides information on a variety of topics including new product approvals, significant labeling changes, notices of upcoming public meetings and more.  Subscribe.


Largest Study Ever on Primary Orthostatic Tremor (OT)

The University of Nebraska Medical Center hosed 50 OT patients from around the world in what was the largest study ever done with OT patients. More >

News for Medical Professionals


Additional Genetic Factors Underlie Behcet’s Disease

Researchers have identified four new regions of DNA that are associated with Behcet’s disease and other more common inflammatory diseases. More>


Genetic Sequencing Speeds Diagnosis of Congenital Hyperinsulinism

A single genetic test has been developed that can identify all mutations associated with hyperinsulinism. More >


Poster on NORD Study Wins First Prize

A poster submitted by a NORD research award recipient has been awarded first prize at the 8th World Congress on Peritoneal Surface Malignancies in Berlin. More>



Stem Cell Case Will Not be Heard by Supreme Court

This is an important victory for rare disease patients because it will allow the NIH to continue conducting and funding stem cell research, following the strict ethical guidelines put in place in 2009. Read the NIH statement.

News for Industry


New Drug Approvals in 2012 Highest in 16 Years

The FDA approved 39 new drugs last year, the highest number since 1996. Approximately one-third of the approvals were for orphan drugs. Read more >


PhRMA Releases Report on Status of Pipeline

The biopharmaceutical pipeline is innovative and robust, according to a new report released by PhRMA. Read the Associated Press story, which quotes NORD. Read the PhRMA report.


Ways to Get Involved in Rare Disease Day 2013

NORD is preparing a kit to provide suggestions on how industry can celebrate Rare Disease Day! Visit the website to learn more. Read more >


FDA's First Breakthrough Therapy Designations Have Been Granted

FDA's first Breakthrough Therapy Designations have been granted, this new designation was made possible by the 2012 FDA Safety and Innovation Act. More >

30th Anniversary Year!

Join us in celebrating the 30th anniversary of NORD and the Orphan Drug Act. Read about rare disease heroes and milestones, as well as special events for all during 2013. More >

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