Families Push for New Ways to Research Rare Diseases

Families Push for New Ways to Research Rare Diseases . A version of this article appeared February 19, 2013, on page D1 in the U.S. edition of The Wall Street Journal, with the headline: Families Push For New Ways To Research Rare Diseases.

Parents with children who have rare and debilitating diseases are pushing to change how researchers develop medicines to treat the conditions.

The idea of sharing medical data from patients with rare diseases is gaining backing from public-health officials at the National Institutes of Health and the Food and Drug Administration

Companies and academic researchers, though, are often reluctant to cede control of what they consider proprietary information.