CAL RARE

Congratulations to California’s Legislative Rare Disease Caucus Co-Chair Rob Bonta for being appointed moments ago as California’s new Attorney General.

COVID Vaccine News!!! Those with high risk conditions and disabilities are eligible for the COVID vaccine beginning on March 15. And people can verify through self-attestation. Please see link for detailed info about how to get an appointment. We urge every rare patient to discuss with your medical team if the vaccine is right for you. ... We thank Governor Newsom and the CA Dept of Public Health for listening to our advocacy and for protecting rare patients. Details: https://www.cdph.ca.gov///vaccine-high-risk-factsheet.aspx

In case you missed it! (Caucus Briefing Recording) During last week's Rare Disease Congressional Caucus Virtual Briefing, the EveryLife Foundation for Rare Dise...ases announced the publication of a report called The National Economic Burden of Rare Disease Study, which found that the economic cost of 379 rare diseases approached $1 trillion in the US in 2019. Watch the Rare Disease Congressional Caucus Virtual Briefing, Economic Burden of Rare Diseases in America: A Public Health Crisis here: http://bit.ly/3ep4Q7V For more information and to engage visit: burdenstudy.org #burdenstudy #rarecaucus #raredisease #policy #everyvoicematters

Rare Across America- Day Two! Cal Rare Founder/President Angela Ramirez Holmes was the team leader for our meeting with the office of Congressman Eric Swalwell (CD15). We appreciate that Congressman Swalwell is a member of the Rare Disease Congressional Caucus. #RareAcrossAmerica2021 #RDLA

Today is Rare Across America! We can’t be in DC, but we are happy to join a virtual meeting today with the staff of California’s newest U.S. Senator Alex Padilla. #RareAcrossAmerica2021 #RDLA

Summer is coming! Okay, we want something to look forward to. Did you know that the State of California provides beach wheelchairs free of charge at state beaches? Check out the info at link. #MotivationMonday #RareDisease #CareAboutRare