Office of Rare Diseases (ORD) Brochure
What is a Rare Disease?
A rare disease is a disease or condition that affects
fewer than 200,000 people in the United States. It is estimated that
more than 25 million people in the United States have a type of rare disease.
What is ORD?
The Office of Rare Diseases (ORD) was established in
1993 within the Office of the Director of the National Institutes of Health (NIH),
the Federal focal point
for health research. ORD
coordinates and supports
rare diseases
research,
responds to
research
opportunities
for rare diseases,
and
provides information
on rare
diseases. In
2002, the Congress
and President Bush
established ORD and its
responsibilities in statute
by enacting and signing
Public Law 107–280, The
Rare Diseases Act of 2002.
What Does ORD Do?
- Recommends an agenda for conducting
rare diseases research.
- Supports research and training of NIH
rare diseases investigators, together with
NIH Institutes and Centers, at the NIH
Clinical Center hospital and medical
research centers throughout the Nation.
- Supports a rare diseases clinical research
network (http://www.rarediseasesnetwork.org/) and other scientific opportunities.
- Coordinates and encourages cooperation
in rare diseases research.
- Responds to scientific opportunities and
builds international collaborations.
- Supports an extensive scientific conferences
program.
- Cosponsors, with the National Human
Genome Research Institute, the Genetic
and Rare Diseases Information Center.
- Provides information on genetic and
acquired rare diseases in English and
Spanish to patients, their families, health
care professionals, and researchers.
- Compiles yearly reports for Congress and
the public about NIH-supported scientific
research plans on rare diseases.
What Is the ORD Web Site?
The Web site provides information about
ORD-sponsored biomedical research, scientific
conferences, and rare and genetic diseases.
It also serves as a portal to information on
major topics of interest to the rare diseases
community. http://rarediseases.info.nih.gov
The ORD Web site links to:
- Information on many of the more than
6,000 rare diseases known today
(http://rarediseases.info.nih.gov/RareDiseaseList.aspx?PageID=1).
- Contact information for the Genetic and
Rare Diseases Information Center.
- Planned, ongoing, or completed clinical
studies and trials.
- Research funding opportunities from NIH
and other sources.
- Patient recruitment and referral procedures
for the NIH Clinical Center hospital.
- Publications and reports.
- National and international voluntary
health organizations (patient advocacy
groups).
- Genetic counseling and testing.
- Information on transportation and lodging
for patients and their families during
diagnosis and treatment.
- Information on ORD-sponsored scientific
conferences.
- Other issues of interest to patients with
rare diseases, their families, researchers,
health care professionals, and the general
public.
For Information about
Rare Diseases
Genetic and Rare Diseases
Information Center (GARD)
P.O. Box 8126
Gaithersburg, MD 20988-8126
Toll-free: (888) 205-2311
TTY: (888) 205-3223
International Telephone Access Number:
(301) 5193194
E-mail: GARDinfo@nih.gov
Office of Rare Diseases (ORD)
6100 Executive Boulevard
Room 3B01, MSC 7518
Bethesda, Maryland 208927518
Telephone: (301) 4024336
Fax: (301) 4809655
E-mail: ord@od.nih.gov
Last Reviewed: June 17, 2005
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