email@example.com firstname.lastname@example.org www.rarediseases.org Other Contact Information
NORD Washington Office
1779 Massachusetts Avenue
Washington, DC 20036
202-588-5700 (Voice) 202-588-5701 (FAX) Description
The National Organization for Rare Disorders, Inc. (NORD) is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. Office hours are from Monday-Friday 9am-5pm EST. Voice mail is available. NORD's web site also includes a searchable version of the Rare Diseases Database (RDB). There are also additional NORD databases you may access.
Reports available on over 1,262 rare (orphan) diseases. Serial Publication: NORD has a montly E-News available online. NORD’s reports are free, there is a limit (2) per day. Other publications: NORD Resource Guide; free booklets for physicians, including 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 Giant Hypertrophic Gastritis and Menetrier’s Disease, The Physician’s Guide to Amyloidosis, The Physician’s Guide to Medullary Thyroid Cancer, The Physician’s Guide to Hereditary Angioedema (HAE), The Physician’s Guide to Homocystinurias and The Physician’s Guide to Treacher Collins Syndrome. Interested individuals can also join as members to network with other patients and their families. The membership fee for this service is $30.00 per year.
Tuesday, Dec 28, 2010