The National Organization for Rare Disorders (NORD)


Database Subscriptions

Many libraries, schools, universities, and hospitals subscribe to NORD’s Rare Disease Database for unlimited access to reports on more than 1,150 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 1,150 diseases.

View sample report

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.

Letters and Position Papers Related to Medicare

Letter to CMS Administrator Mark McClellan regarding changes to the Hospital Outpatient Prospective Payment System and Calendar Year 2006 Payment Rates
September 16, 2005

Letter to CMS Administrator Mark McClellan Regarding Excluding Some Orphan Drugs From the CAP Program
September 6, 2005

Letter to CMS regarding "coverage with evidence development"
June 3, 2005

Letter to CMS Administrator Mark McClellan, MD, PhD, regarding "specialty tiers"
May 17, 2005

Letter to CMS Administrator Mark McClellan regarding formulary review
December 30, 2004

Letter to CMS Administrator Mark McClellan regarding Part D
October 1, 2004

Comments submitted to CMS Administrator Mark McClellan regarding Section 303
September 23, 2004

NORD presentation to U.S. Pharmacopeia regarding access of Medicare beneficiaries to orphan drug products.
August 27, 2004

Letter to CMS regarding changes to the Hospital Outpatient Prospective Payment System
October 8, 2003

Letter to CMS regarding changes to the Hospital Outpatient Prospective Payment System
September 27, 2002

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ABOUT | CONTACT NORD

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

Volunteers in Public Policy

You can help NORD provide advocacy for rare-disease patients and their families. Every voice is important. Click here to submit your email address so that you can join NORD’s Volunteers in Public Policy.

Tips for communicating with your Congressional representatives

Contact your Congressional representatives:

Senate
House of Representatives

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Last modified Thursday, March 27, 2008