Rare Disease California Caucus Hearing 8/27/19
The bipartisan Rare Disease Caucus will host an information briefing on Tuesday, August 27, 2019 from 11am-12pm at the California State Capitol, Room 127. A complimentary lunch follows in Room 125.
The subject is Rare Research and the agenda includes a spotlight on the rare disease Amyloidosis, a look ahead at innovation in digital medicine, and an update on the work of Caucus members for rare disease patients including a report on Project Baby Bear: the $2 million Whole Genome Sequencing Pilot Project, and the $15 million Sickle Cell Disease budget appropriation.