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.
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Programs & Services
NORD Subscriptions
Many public libraries, hospitals, schools, social-service agencies, and universities
subscribe to NORD's Rare Disease Database for patients and families. A subscription
provides unlimited access to over 1200 disease reports and helps people find support
groups and other patient organizations. It's an invaluable tool for family counseling
and referrals.
In the past, subscribers accessed the database via password and username. Recently,
in response to requests from subscribers, NORD instituted a new IP access
option. With ip access, instead of viewing the report abstract, users view the entire report.
Now, subscribers may choose either of these approaches.
The disease reports are written in understandable language. They cover symptoms,
causes, and standard and investigational therapies. Each report includes a list
of support groups and other patient organizations for that disease, with Web
links and complete contact information. 5 disease reports are included in the Demo below.
The cost of a subscription using a password and username is $450 per year.
There is an additional $50 annual fee for subscribers who choose IP access (with
an extra $25 for each additional IP address or range of addresses beyond the
first).
The reports in the database are copyrighted, and subscribers must agree not
to alter the information in any way or to sell it to others. Subscribers may
print individual reports for distribution to their members or clients as long
as those reports clearly bear the NORD copyright notice, name, address, and
Web site. (Our simple subscription agreement is included in the Demo below)
For information about Web subscriptions, write to the Webmaster at
webmaster@rarediseases.org
or Mary Dunkle at mdunkle@rarediseases.org,
or call (203) 744-0100. Subscriptions using the password/username option may
be ordered online. For IP access subscriptions, contact the Webmaster or Mary to let them
know what IP address or range of addresses you would like to use.
Download Demo (zip)
One year subscription $450
View Cart/Checkout
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Over 1200 Disease Reports
Not a Subscriber yet?
Details
Here
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Help NORD improve the lives of people with rare diseases. |
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Since 1983, working toward the prevention, treatment, and cure of rare
“orphan” diseases.
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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.
When You Buy a Report...
NORD is not a government agency. The $7.50 processing fee for disease reports, and the annual fee for subscriptions, are the primary source of support for our Web site and database maintenance. When you pay those fees, you support advocacy and many other services provided by NORD.
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