Introduction to Rare Disease and Ways to Engage
Rare diseases are medical conditions that affect fewer than one in 200,000 people in the U.S. Among the approximately 30 million Americans affected by rare diseases, less than one in 10 receive a correct diagnosis and necessary medical treatment. Many of these conditions impact Asian Americans and Pacific Islanders (AAPI) who comprise approximately 7% of the total U.S. population. This webinar will share rare disease rates, challenges and some policy options for lawmakers. Moderator: Representative My-Linh Thai, Washington, NAPACSL Officer. Speaker: Pam Gavin, CEO, National Organization for Rare Disorders (NORD).