The National Organization for Rare Disorders (NORD)

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Index of Rare Diseases

This is the list of diseases currently covered in the Rare Disease Database.

Rare Disease Database

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Index of Organizations

This is the list of organizations in NORD’s Organizational Database.

Organizational Database

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NORD's
Washington Office

Check here to read about events on Capitol Hill, funding for rare-disease research, and other topics of interest from NORD's office in Washington, DC.

 

News Briefs

NORD Representatives
Address Congress

Access to Life-saving Medicines Act of 2007

NORD member Mary Nathan (shown with Congressman Henry Waxman) volunteered to present testimony before the U.S. House of Representatives Committee on Oversight and Government Reform in March. She spoke on behalf of the Access to Life-saving Medicines Act of 2007, which NORD supports. This Act would create a pathway for the U.S. Food and Drug Administration (FDA) to review lower cost or “follow-on” biologic products after the patents on medications expire.

It was introduced by Congressman Waxman (D-CA) in the U.S. House of Representatives and by Senators Charles Schumer (D-NY) and Hilary Clinton (D-NY) in the Senate. Sponsors include Jo Ann Emerson (R-MO), Mac Thornberry (R-TX) and Peter Hoekstra (R-MI) in the House and Norm Coleman (R-MN), and Susan Collins (R-ME) in the Senate.

Pediatric Medical Device Safety and Improvement Act

A member of NORD’s Medical Advisory Committee, Robert Campbell, Jr., MD, testified recently before the U.S. Senate Health, Education, Labor and Pensions (HELP) Committee on the topic, “Ensuring Safe Medicines and Medical Devices for Children”.

Dr. Campbell’s testimony was in support of the Pediatric Medical Device Safety and Improvement Act (S. 830), introduced recently by Senator Christopher Dodd (D-CT). “This bill will help children get the safe medical and surgical devices they need by strengthening safety requirements and encouraging research, development, and manufacture of pediatric devices,” Dr. Campbell said. An orthopedic surgeon affiliated with the University of Texas Health Science Center at San Antonio, Dr. Campbell described his own experiences in developing a device for pediatric use known as the titanium rib.

Read Mary Nathan's testimony

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Since 1983, working toward the prevention, treatment, and cure of rare “orphan” diseases.

Previous News Briefs

ICORD 2008

FDA and European Union Adopt Shared Form

NORD Representatives Address Congress

CETT Increases Access to Genetic Tests

NORD Honors Innovators at 2007 Tribute Banquet

FDA Approves First Product for PNH

NORD Staff and Rare-Disease Researchers Describe Their Work for Wife of President of Germany

A Common Lesson of Rare Diseases

NORD Issues RFPs

Deadline Announced for Grant Applications

Conference in Korea Focuses on Rare Diseases

FDA Approves Revlimid For Multiple Myeloma

Penn Researchers Pinpoint Cause of FOP

FDA Approves HDE for Rare Disorder of Placenta

CFC Genes Identified With Help of Patient Organization

Saving Andy Martin’s Cells

Haffner Honored by Royal College of Physicians

NORD President Honored For Health Advocacy

NIH Opens New Clinical Research Hospital

Gulf War ALS Study Results Reported

Researchers Identify Progeria Gene

Dystonia Patients Gain Access to "Brain Pacemaker"

Scientists Block CJD-Like Illness in Mice

Genetic Signature Linked to Severe Lupus Symptoms

Genes Linked to Methylmalonic Aciduria Identified

French Researchers Claim a Cure for Severe Sickle Cell

NF1 Research: When a Good Gene Goes Bad

Thalidomide Shows Promise

For Smallpox: Vaccine Production on Target

NORD Member Organization Update August 2002

FDA Approves New "Orphan Drug"

Supreme Court Narrows Disability Law

Dramatic Results Reported in Stiff Person Syndrome Study

Gulf War Vets Have Higher Rate of ALS

Diseases of Bioterrorism

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Last modified Monday, June 02, 2008