Disease Information from NORD, National Organization for Rare Disorders, Inc.

The National Organization for Rare Disorders (NORD)

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• Database Subscriptions

Many libraries, schools, universities, and hospitals subscribe to NORD’s Rare Disease Database for unlimited access to reports on more than 1,200 diseases.

• Index of Rare Diseases

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

• Rare Disease Database

Search this database for reports on more than 1,200 diseases.

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• Index of Organizations

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

• Organizational Database

Read about more than 2,000 patient organizations and other sources of help.

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.

Reprinted Articles

Celebrating 25 Years
of the Orphan Drug Act

Oncology Business Review, March 2008

BY JOHN WATSON

A boon to patients and biotech alike, the Orphan Drug Act has stimulated the development of several of the biggest blockbuster drugs in oncology.

Despite the best efforts of determined researchers, drug development almost always occurs through incremental advances rather than monumental breakthroughs. Research begets more research and, if we’re lucky, a new treatment emerges years down the line. While this paradigm still holds true today, there is an occasional watershed moment that forever alters the landscape of contemporary treatment.

Download the article.

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ABOUT | CONTACT NORD

Help NORD improve the lives of people with rare diseases.

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

Read an article co-authored by Abbey Meyers of NORD and M. Lipucci di Paola of the European Organization for Rare Disorders (EURORDIS) entitled "The Orphan Medicinal Products: An International Challenge" (June 2003 Minerva Biotecnologica).

Previous Articles & Letters

Diseases Without Clout

Orphan Drugs Save Lives, But Who Pays?

Many Docs Get Newborn Screening Test Results Late

Letter in Support of Increased FDA Funding

Comments Regarding FDA's Regulations, Guidances, Policies and Practices

Letter to the FDA Regarding Pediatric Labeling

FDA Office of Orphan Products Development FY2001 Accomplishments

Secretary's Advisory Committee on Regulatory Reform

New Initiatives to Protect Patients in Gene Therapy Trials

New York Times Article on Rare Disorders

HHS Enhances Patient Protections: NIH and FDA to Cooperate

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Last modified Tuesday, March 25, 2008