Rare disease patients raise awareness at NIH

Patients with rare diseases are headed to the NIH today to raise awareness about their conditions among researchers and policymakers. An estimated 30 million people across the U.S. have a rare disease, which means it affects fewer than 200,000 people, according to the U.S. definition. One idea on the agenda at the NIH’s Rare Disease Day: tapping into data from patient registries. Collecting and analyzing data from as many patients as possible could help researchers better understand both the diseases and how they affects patients’ lives.