Rare Disease Day 2016

On February 29th, 2016, we attended Rare Disease Day at the State Capitol building in Sacramento, CA with other rare disease advocates to raise awareness of rare diseases and advocate for legislation by targeting the general public, policy makers, public authorities, industry representatives, researchers, and health professionals.

In partnership with the National Organization for Rare Disorders, we presented a bill to memorialize the last day of February 2017 as Rare Disease Day. We also were able to meet with our good friend and legislative advocate, California State Senator and pediatrician Dr. Richard Pan, who authored our bill back in 2014 to add ALD to California’s newborn screening program. Now that ALD has been added to the RUSP, California can begin screening babies for ALD by mid-2016.