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Friday, January 15, 2010

Undiagnosed Diseases Program

National Institutes of Health
Office of Rare Diseases Research

Undiagnosed Diseases Program

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.

Some patients wait years for a definitive diagnosis. Using a unique combination of scientific and medical expertise and resources at the National Institutes of Health (NIH), the Undiagnosed Diseases Program pursues two goals:

  • To provide answers to patients with mysterious conditions that have long eluded diagnosis
  • To advance medical knowledge about rare and common diseases

The program is trans-NIH in scope. It is organized by the National Human Genome Research Institute (NHGRI), the NIH Office of Rare Diseases Research (ORDR) and the NIH Clinical Center. Many medical specialties from other NIH research centers and institutes will contribute expertise needed to conduct the program, including endocrinology, immunology, oncology, dermatology, dentistry, cardiology, and genetics, which are represented among the dozens of participating senior attending physicians who may participate in the program's clinical research.

Any longstanding medical condition that eludes diagnosis by a referring physician can be considered undiagnosed and may be of interest to this clinical research program. Of the total number of cases that may be referred to this program, a very limited number will be invited to proceed in the study at the discretion of the program’s medical team.

For more information please call (866) 444-8806

Please do not send Undiagnosed Diseases Program-related email or submit medical records to the NIH Office of Rare Diseases. All communication should be handled through the Undiagnosed Diseases Program staff at the NIH Clinical Center.


Program Information
News
Patient Support
Syndromes Without A Name- USA (SWAN-USA)

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