National Organization for Rare Disorders, Inc.
The National Organization for Rare Disorders (NORD) is a unique federation of voluntary health organizations and individuals 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.
Begun in 1983, NORD was an outgrowth of a unified effort by rare disease support groups who were determined to solve the “orphan drug” dilemma. Treatments for these disorders were not being developed by the pharmaceutical industry because they were “drugs of limited commercial value”. Consequently, voluntary health agencies and support groups banded together to urge passage of federal legislation that would encourage pharmaceutical companies to develop “orphan drugs”. In 1983, when the Orphan Drug Act was enacted, NORD was formalized into a national non-profit, voluntary health agency dedicated to the welfare of people with rare disorders.
NORD’s primary program is education of the public and medical professionals. NORD is a worldwide clearing house for information about rare “orphan”diseases. Reports are written in simple, easy to understand language for patients and their families. This information is also made available to the public through the Rare Disease Database (RDB) on NORD’s Internet site: www.rarediseases.org.
The Rare Disease Database has reports on more than 1100 rare diseases.
Other NORD databases include:
1) the NORD Organizational Database listing more than 1,200 organizations and support groups that provide help to families affected by rare diseases
2) The Orphan Drug Designation Database listing almost 1,000 treatments that have been designated as “orphan drugs” by the FDA
Besides advocating for increased government research funding and referring patients to clinical trials and genetic investigations, NORD funds clinical research grants on new treatments for rare diseases. Donors may contribute to NORD’s general research fund or restrict their gift to research on a specific rare disorder.
NORD’s “Networking Program” puts families with the same diagnosis in touch with each other. This helps people find mutual support and encourages the formation of new support groups for specific diseases.
NORD provides information to medical professionals, libraries, educators, corporations, and individuals. It refers patients and families to appropriate sources of assistance. When patients are needed for clinical trials, they are referred to the researchers through NORD’s confidential patient registry. NORD can usually locate patients with even the rarest diagnoses.
SUPPORT GROUPS & ADVOCACY
NORD provides technical assistance to support groups, helping them to start and grow with minimal waste of precious resources. Local chapters of NORD are being established in several communities.
NORD monitors implementation of the ORPHAN DRUG ACT and advocates for increased government funding of medical research on rare disorders.
NORD is an advocate for the interests of all people with rare diseases, helping to assure that government programs and services are available and accessible to patients and families.
NORD MEMBERSHIP & SUPPORT
NORD relies on membership contributions to continue providing its programs of education, advocacy, research, and service to people with rare disorders. NORD spends your contribution dollars wisely, with more than 80 cents of every dollar going directly to programs that benefit people with rare diseases.
Your membership contributions to NORD will ensure that you continue to receive the NORD newsletter, ORPHAN DISEASE UPDATE, which reports on:
- Progress in research on rare disorders
- Recent activities of government, health-related industries and the scientific community
- Personal accounts of courageous struggles by people with orphan diseases
FOR MORE INFORMATION OR TO CONTACT NORD
100 Route 37, P.O. Box 8923
New Fairfield, CT 06812-8923
Telephone: (203) 746-6518
Fax: (203) 746-6481
Web Site: www.rarediseases.org