The California Rare Diseases Caucus Holding an Informational Hearing at State Capitol
The California Rare Diseases Caucus will hold an Informational Hearing today at the State Capitol in Sacramento.
According to Global Genes, a rare disease advocacy organization, there are 7,000
distinct types of rare and genetic disease. It takes, on average, eight years for a rare
disease patient to receive an accurate diagnosis. The financial and emotional costs of
delayed and inaccurate diagnoses are significant.
Rare diseases, although by definition rare, all together affect more people than cancer
and AIDS combined. Building awareness of the care and treatment access issues
impacting rare disease patients is an important goal.
CalRare, a coalition of rare disease stakeholders working to raise awareness of these
issues among the public and decision makers, and is working with the bipartisan Rare
Disease California Caucus to on the hearing in Sacramento.
Co-chaired by our local Assemblymembers Brian Maienshein and Marie Waldron, the
hearing will highlight caucus projects, such as this year’s sickle cell disease budget
appropriation, and spotlight a rare disease – amyloidosis. Amyloidosis is a group of rare
diseases in which the protein amyloid builds up in tissues and organs, such as the
heart, preventing them from proper functioning. California is home to several health care
systems with expertise in amyloidosis, including Scripps in San Diego.
To view the agenda for the hearing, please click here.