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

The National Organization for Rare Disorders (NORD)

Member/Subscriber Login

• 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.

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.

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

Programs & Services

Patient Organizations

NORD staff members welcome opportunities to share their experience and advice with individuals who are launching or leading rare-disease patient organizations. The following articles have appeared in NORD publications or been presented at conferences or workshops. If you have additional questions related to starting a new organization or leading an existing one, please feel free to contact the NORD staff members who are listed below with their areas of responsibility.

(MORE LINKS COMING SOON)

How to Start a Patient Organization

Advocacy 101: How to be an Effective Advocate

How to be an Effective Fund-Raiser

Communications for Non-Profits
(Click to continue on each slide of this PowerPoint presentation.)

Sample Policy for a Research Program

CONTACTS
Jean Campbell (Fund-Raising; Starting & Running an Organization; Non-Profit Status)
Vice President for Development
jcampbell@rarediseases.org
(203) 744-0100

Diane Dorman (Advocacy; Liaison to Congress, Government Agencies, and Industry)
Vice President for Public Policy
ddorman@rarediseases.org
(202) 496-1296 ext. 3014

Mary Dunkle (Communications; Web Sites; Running a Research Program)
Vice President for Communications
mdunkle@rarediseases.org
(203) 744-0100

Maria Hardin (Medicare; Insurance; Medication Assistance Programs)
Vice President for Patient Services
mhardin@rarediseases.org
(203) 744-0100

Over 1200 Disease Reports
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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.

NORD Resource Guide

The new and expanded NORD Resource Guide (5th edition) is now available. It lists more than 1,300 organizations helping people with rare disorders.

Travel Assistance

For information about free or low-cost travel to treatment facilities or sites of clinical studies, NORD refers patients and families to the National Patient Travel Center.

Become a NORD Member

As a member of NORD, you’ll receive benefits in addition to the satisfaction of knowing you’re helping people with rare diseases. Read about our levels of Membership and the benefits of each.

Last modified Friday, January 30, 2009