National Institutes of Health - Office of Rare Diseases - US
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.