There are currently about 8,000 rare diseases with no cure that afflict approximately 25 million people worldwide. Rare diseases, also known as “orphan drug” diseases, afflict between 1/1,000 to 1/200,000 (people/population). Many rare diseases are genetic and most occur early in life with 30% of patients dying before reaching five years of age. Due to the current pharmaceutical industry structure (e.g., high development costs of over $1 billion per drug, 6 of 10 approved products are not profitable, declining productivity, patent expiries), rare diseases are typically not pursued versus blockbuster drugs which offer larger markets and attractive rates of return. The industry has turned to mergers and cost cutting, but the blockbuster model appears unsustainable. Likewise, the lack of scale in research and development is significantly impeding progress in addressing the needs of the rare disease community.

The Opportunity:

In 2003 back-to-back papers in the premier scientific journals, Nature and Science, reported the completion of a high-quality sequence of the human genome. This remarkable advance was made only 50 years after the discovery of the double-helical structure of DNA. The era of personalized medicine holds enormous promise to address a broad range of diseases and move health care from focusing on treatment to prevention to wellness—with the attendant benefits in quality of life and reductions in pressing health care costs.

Our Mission:

We believe that stakeholders can mobilize to leverage advances in biotechnology and create a new approach to treating disease, which will make market size increasingly irrelevant. The mission of Oregenetics is to develop a sustainable model for developing treatments for rare diseases by focusing on the genetic basis of disease, using technology to empower the rare disease community, and collaborating with key stakeholders to create a social movement towards using the best science to relieve human suffering.

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