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

• 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.

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

Free Booklets for Physicians

Click on the images to view a sample of each booklet. Please note: the pages may take some time to load.

NORD has a series of free booklets for physicians and other medical professionals. These publications are funded by individuals or organizations to encourage early diagnosis of rare diseases.

To date, there are nine booklets in the series: The Pediatrician's Guide to Tyrosinemia Type I, The Pediatrician's Guide to Ornithine Transcarbamylase Deficiency...and other Urea Cycle Disorders, The Physician's Guide to Primary Lateral Sclerosis, The Physician's Guide to Pompe Disease, The Physician's Guide to Multiple System Atrophy, and The Physician's Guide to Hereditary Ataxia, Giant Hypertrophic Gastritis and Menetrier's Disease, The Physician's Guide to Amyloidosis and The Physician's Guide to Medullary Thyroid Cancer.

Funding to create and distribute the booklets has been provided by the NORD/Danielle Barckett Tyrosinemia Fund (tyrosinemia booklet), the NORD/Jesse Gelsinger Ornithine Transcarbamylase Deficiency Fund (OTC booklet), the NORD/PLS Educational Fund (PLS booklet), the Acid Maltase Deficiency Foundation (Pompe booklet), individual donors (MSA, Ataxia booklets, GHG and Amyloidosis), and AstraZeneca (Medullary Thyroid Cancer).

In each case, the booklets were written by NORD's medical writers with input from the sponsoring organizations and reviewed by NORD's medical advisors, or written by physicians with expertise on the topics.

Each booklet receives a wide distribution to physicians across the United States. For instance, both the tyrosinemia and OTC booklets were mailed to all members of the American Academy of Pediatrics, as well as to other physicians. When NORD's staff members attend medical meetings, they distribute copies of the booklets.

Physicians (or other medical professionals) who would like to request copies of the existing booklets should send an e-mail to mdunkle@rarediseases.org or call NORD at (203) 744-0100.

Individuals or organizations wishing to discuss the possibility of creating a future booklet for this series should send an e-mail to jcampbell@rarediseases.org or call NORD and ask for Jean Campbell.

Last modified Friday, January 30, 2009