Publications

NORD Publications

Request Your Copy of NORD's Annual Report for 2006
Three cents of every dollar donated to NORD in 2006 went to fundraising and administrative expenses. All the rest went directly to programs and services to improve the quality of life and care for people with rare diseases and their families. NORD's Annual Report for 2006 is now available. To request a copy through the mail, call or write to NORD. Download the annual report (PDF).

NORD Resource Guide, 5th Edition
The NORD Resource Guide is widely used in office and institutional settings, such as libraries, medical offices, social service agencies, schools, and hospitals, where families may seek assistance in finding sources of help and encouragement. The 5th edition was published in 2005.

This 740-page reference book provides descriptions and contact information for 1,348 patient organizations, foundations, and registries that help individuals and families affected by rare diseases. Each entry includes a brief description of the mission and services of the organization, with phone and fax numbers, address, Web site, and e-mail address.

A keyword index makes it possible to search using the organization's name, the disease name, or the disease category. The Resource Guide may be purchased online or by calling NORD. The cost is $50 plus $7 for shipping and handling with the United States, $12 for shipping to Canada, and $20 for shipping to all other locations.

NORD Guide to Rare Disorders
This 900-page textbook is intended for physicians and other medical professionals. It was published in 2003 by Lippincott, Williams & Wilkins. The NORD Guide to Rare Disorders covers 800 rare diseases, with entries written by physicians with particular expertise on their topics. In many cases, the entries are written by the physicians who originally identified the disorders.

More than 600 physicians from universities and hospitals throughout the United States and abroad wrote entries for this book. A panel of physicians served as chapter reviewers.

The book is available through Lippincott at www.lww.com or (800) 638-3030. (The number to call from outside the U.S. and Canada is 301-223-2300.) Orders may be faxed to (301) 223-2400. This book is also available through www.barnesandnoble.com. The cost of the book is $89.95.

Read a review of the NORD Guide to Rare Disorders from the April 10, 2003, issue of The Lancet.

Free Guides for Physicians
This series of free booklets is available upon request to physicians and other medical professionals. NORD's hope is that these booklets will increase awareness of rare diseases and help patients by encouraging earlier diagnosis and appropriate referral.

To date, there are six booklets in the series. Additional titles are anticipated in the future. The booklets are created with funds donated to NORD by patient organizations and individuals with an interest in enhancing awareness of particular diseases.

The booklets available at the present time are: The Physician'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.

To obtain copies of these booklets, write to mdunkle@rarediseases.org.

Generic Biologics White Paper
More than 20 percent of orphan drugs on the America market are "biologics", which are medicines made from living organisms. As the first few marketed biologics near the end of their patent protection and exclusive marketing periods, the major question is whether safe and effective generic versions of biologics can be produced and sold at lower prices than their brand-name counterparts, as happens with drugs.

NORD convened a meeting of experts on this topic in Washington, DC, to discuss the scientific, legal, regulatory, and economic issues related to this question. A publication summarizing papers presented at that meeting is available free upon request. For a copy of this publication, call NORD (203-744-0100 or 800-999-NORD) or write to orphan@rarediseases.org.

Orphan Disease Update
This is the newsletter received three times each year by NORD's members and friends. It is a 16-page publication that provides news of interest to all in the rare-disease community - patients and their families; physicians, nurses, genetic counselors, and other medical professionals; medical researchers; teachers; social workers; government officials; and representatives of the pharmaceutical and biotech industries.

The Orphan Disease Update comes out in the spring, summer, and fall. It provides updates on research, advocacy, and special events, as well as advice and sources of help for caregivers, Web sites of interest, current clinical trials, and funding opportunities.

For a sample copy of the Orphan Disease Update, call NORD or write to orphan@rarediseases.org.

Literature Order Form
This form lists all reports available through NORD's Rare Disease Database. Copies are mailed with each issue of the newsletter and are also available upon request. In addition, the Literature Order Form is distributed at medical meetings.