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Office of the Director (OD)

Office of Rare Diseases (ORD)

Office of Technology Transfer (OTT)

Monday, December 11, 2006

Kelli Marciel, ORD

NIH Announces Licensing Opportunities for Rare Disease Technologies

The National Institutes of Health (NIH) launched a new website today offering technologies available for commercial licensing that are related to rare diseases or conditions. The listing can be found at http://www.ott.nih.gov/rarediseases and currently consists of more than 500 such technologies, including drugs, biologics, and devices, available to be transferred from the NIH and the U.S. Food and Drug Administration (FDA) to the private sector for further research and development and potential commercialization.

The new resource was developed by the Office of Rare Diseases (ORD) and the Office of Technology Transfer (OTT) at the NIH. “By making it much easier for pharmaceutical companies and academic institutions to identify licensing opportunities, this new site will help facilitate the transfer of research advances from bench to bedside where the interventions can ultimately benefit patients,” said NIH Director, Elias Zerhouni, M.D.

A rare disease is defined as one with prevalence less than 200,000 in the United States*. There are an estimated 25 to 30 million people in the United States with one of over 6,500 known rare diseases. Though technically “rare,” some rare diseases are familiar, such as meningitis (inflammation of membranes of the brain and spinal cord most commonly caused by a bacterial or viral infection) and Lou Gehrig’s Disease (amyotrophic lateral sclerosis, or ALS, a chronic, progressive disease marked by gradual degeneration of the nerve cells in the central nervous system that control voluntary muscle movement).

Stephen Groft, Pharm.D., Director of ORD, explained that, “Because relatively few people are affected by any one rare disease, finding therapies for each poses unique challenges and requires innovative approaches.” He added, “We’re excited about this new mechanism to foster collaboration with the private sector and the potential to make a real difference for patients.”

The website module was developed by OTT and ORD in an attempt to provide a more collaborative, consolidated, and systematic approach to the development of products for rare diseases and conditions. “In addition to the technologies already available on the site, we encourage not-for profit organizations, academic research centers and foundations in the U.S. and abroad to submit technologies available for licensing from their institutions,” said Mark Rohrbaugh, Ph.D., J.D., Director of OTT. Parties interested in licensing will be directed to the institution owning the technology. More information about submitting additional technologies can be found at http://www.ott.nih.gov/rarediseases/submit.

The NIH Office of Technology Transfer evaluates, protects, licenses, monitors, and manages the NIH and FDA intramural invention portfolios to carry out the mandates of the Federal Technology Transfer Act of 1986. For more information about OTT and its programs, visit www.ott.nih.gov.

The NIH Office of Rare Diseases stimulates and coordinates research on rare diseases and supports research to respond to the needs of patients, healthcare providers and the research communities involved in the care, treatment, and evaluation of products for the preventions, diagnosis, or treatment of theses conditions. For more information about ORD and its programs, visit www.rarediseases.nih.gov.

The National Institutes of Health (NIH) — The Nation's Medical Research Agency — includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. It is the primary federal agency for conducting and supporting basic, clinical and translational medical research, and it investigates the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.

*The term “rare (or orphan) disease,” as defined in the Orphan Drug Act, is a condition affecting fewer than 200,000 in the United States or a disease with a greater prevalence but for which no expectation exists that the costs of developing or distributing a drug can be recovered from the sale of the drug in the United States.
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