The ORDR Web site aims to answer questions about rare diseases and the activities of the ORDR for patients, their families, healthcare providers, researchers, educators, students, and anyone with concern for and interest in rare diseases. The site provides information about ORDR-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.
The ORDR Web site links to:
- Information on many of the rare diseases.
- Information about the services of the Genetic and Rare Diseases Information Center (GARD) and other rare diseases information sources.
- 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.
- Rare diseases publications and reports.
- Sources for genetic testing and counseling.
- A program to develop new genetic tests and to make them available to the public.
- Information on transportation and lodging for patients and their families during diagnosis and treatment at NIH and at other research sites across the Nation.
- Information about ORDR-NIH supported scientific conferences.
- Opportunities for transfer of technology for the prevention, diagnosis, or treatment of rare diseases or conditions.
Frequently Asked Questions
What Is a rare disease?
A rare disease (also called an orphan disease) is a disease or condition affecting fewer than 200,000 persons in the United States. An estimated 25 to 30 million people in the United States have a rare disease.
What Is ORDR?
The Office of Rare Diseases Research (ORDR) was established in 1993 within the Office of the Director of the National Institutes of Health (NIH), the Federal focal point for biomedical research. ORDR coordinates and supports rare diseases research, responds to research opportunities for rare diseases, and provides information on rare diseases. Public Law 107-280, the Rare Diseases Act of 2002, established the ORDR by statute.
What does ORDR do?
- The goals of ORDR are to stimulate and coordinate research on rare diseases and to support research to respond to the needs of patients who have any one of the more than 6,800 rare diseases known today.
- To leverage its resources, stimulate rare diseases research activities, and foster collaboration, ORDR:
- Advises the Director, NIH, on an agenda for conducting rare diseases research and reports to Congress and the public about NIH-supported scientific rare diseases research advances and future plans.
- Supports with NIH Institutes and Centers the Rare Diseases Clinical Research Network (RDCRN).
- Coordinates and encourages cooperation and collaboration in rare diseases research.
- Identifies and responds to scientific opportunities and builds international research collaborations.
- Supports an intramural research program in cooperation with the National Human Genome Research Institute (NHGRI).
- Supports a program to develop new genetic tests that are made available to the public.
- Supports an extensive scientific conferences program in collaboration with the NIH Institutes and Centers.
- Supports the development and implementation of a publicly accessible database of human biospecimen repositories.
- Cosponsors, with the NHGRI, the Genetic and Rare Diseases Information Center.
- Provides opportunities for patient support groups to become partners with the NIH, to better understand NIH research programs, and to gain better access to NIH research opportunities.
How can I get on the ORDR email listserve?
The ORDR regularly updates its email listserve. If you would like to receive periodic updates and important news items from ORDR, please send your request to ordr@od.nih.gov and include contact name, organization name (if applicable), and email address.
Genetic and Rare Diseases Information Center
P.O. Box 8126
Gaithersburg, MD 20988-8126
Toll-free: (888) 205-2311
TTY: (888) 205-3223
International Telephone Access Number: (301) 519-3194
E-mail form: http://rarediseases.info.nih.gov/GARD/EmailForm.aspx
Web Site: http://rarediseases.info.nih.gov/GARD/
Office of Rare Diseases Research
National Center for Advancing Translational Sciences (NCATS)
National Institutes of Health
6701 Democracy Boulevard
Suite 1001, MSC 4874
Bethesda, MD 20892
For courier use (Bethesda, MD 20817)
(301) 402-4336 (voice)
(301) 480-9655 (fax)
ordr@od.nih.gov
Health Hotlines
Health Hotlines is a database of toll-free numbers from the National Library of Medicine (NLM) with descriptions of over 14,000 biomedical information resources, including organizations, databases, research resources, etc.
ORDR Staff
Stephen C. Groft, Pharm.D.
Director
(301) 435-6041
Grofts2@od.nih.gov
P.J. Brooks, Ph.D.
Health Scientist Administrator
(301) 496-7920
pjbrooks@mail.nih.gov
Mary Demory
Senior Program Consultant
(301) 496-0139
demorym@od.nih.gov
David J. Eckstein, Ph.D.
Senior Health Scientist Administrator
(301) 496-0141
eckstein@mail.nih.gov
Marita Eddy
Angel Flight NIH Coordinator
(301) 451-9646
meddy@mail.nih.gov
John H. Ferguson, M.D.
Medical Advisor
(301) 496-0109
jferguson@healthinfoconsultants.com
William Gahl, M.D., Ph.D.
Clinical Director, NHGRI
Director, ORDR-NHGRI Intramural Research Program
(301) 402-8255
bgahl@helix.nih.gov
Rashmi Gopal-Srivastava, Ph.D.
Director, Extramural Research Program
(301) 496-0107
gopalr@od.nih.gov
Chris Griffin
Program Analyst
(301) 496-0266
griffinc@od.nih.gov
Henrietta D. Hyatt-Knorr, M.A.
Director, Policy and Program Planning and Analysis
(301) 435-6045
knorrh@od.nih.gov
Susan Orr Lowe
Program Assistant
(301) 402-4336
lowes@mail.nih.gov
Lata S. Nerurkar, Ph.D.
Senior Advisor, Programs and Policy
(301) 435-5060
nerurkal@od.nih.gov
Geraldine B. Pollen, M.A.
Senior Policy Analyst
(301) 496-0106
polleng@od.nih.gov
Yaffa Rubinstein, Ph.D.
Director of Patient Resources for Clinical and Translational Research
(301) 402-4338
rubinsty@od.nih.gov