Rare Disease California Caucus Briefing 5/3/2023
Please join us for a Rare Disease California Caucus briefing on Access to Care: Telehealth After Covid. State Capitol Room 127. This briefing is open to the public and accessible. A complimentary lunch will follow in Room 125.AGENDA
Rare Disease California Caucus Hearing 8/9/2022
Please join us for a Rare Disease California Caucus hearing on Access and Affordability. The agenda will provide information on the Genetically Handicapped Persons Program and the new CA Office on Healthcare Affordability and an update on the Rare Disease Caucus at Work including newborn screening and SB 912. This hearing will be in a hybrid format, open to the public, and accessible. Hearing location: Room 127. A complimentary lunch will follow in Room 125 for in person attendees.
WEBINAR: Understanding Health Insurance for Rare Disease Patients
Virtual Event: How To Survive School With A Rare Disease
Virtual Event: Mindfulness
Video: Virtual Rare Disease Caucus Hearing August 12, 2020
Virtual Rare Disease Caucus Hearing
Virtual Rare Disease Caucus Hearing!
Wednesday, August 12, 2020
Rare Disease Day Family Meetup
What a Year! 2019 Year In Review
Rare NBA Week!
TWO Rare Disease Awareness Nights in March!
For Kings tickets, click here
For Warriors tickets...go to Cal Rare Contribute page, complete form adding "Warriors" in Membership field, add amount equivalent to the number of tickets you wish to purchase
Cal Rare Announces Two New Board Members
The California Action Link for Rare Diseases (Cal Rare) is pleased to announce the addition of two new members to their Board of Directors, Hudson Freeze and Dr. Gregory Enns. The Board is comprised of rare disease stakeholders who provide leadership and expertise for carrying out the mission of the non-profit.
“It is an honor to welcome Hudson Freeze and Dr. Gregory Enns to the Board. Each brings a wealth of experience and expertise in rare disease research and a desire to ambitiously advocate for patients,” said Angela Ramirez Holmes, parent advocate and Founder/President of Cal Rare. “They will be a tremendous asset as we further our mission of improving the lives of rare disease patients in California.”
Joint Hearing: Project Baby Bear
Joint Hearing of the Assembly Select Committee on Biotechnology and the California Legislative Rare Disease Caucus to be held on Tuesday, October 15, 2019 in San Diego.
"Assessing California's Clinical Whole Genome Sequencing Pilot Project in Medi-Cal: An Interim Report on the Practical Application of Precision Medicine in California"
Research has shown that clinical rapid whole genome sequencing (rWGS) is effective for rapid diagnosis and early treatment of genetic diseases in acutely ill infants in intensive care units, and results in improved outcomes and reduced cost of hospitalization in some patients. Currently, rWGS is not a reimbursed test under Medicaid, and not yet available to most Medi-Cal enrolled infants. On June 27, 2018, the California State Budget appropriated $2,000,000 in funding for a Medi-Cal Whole Genome Sequencing Pilot Program. The State Department of Health Care Services in turn provided this grant to Rady Children’s Hospital – San Diego (RCHSD), a California non-profit organization, in order to execute an rWGS Pilot Program now named “Project Baby Bear.”
Pilot Project Objectives
Project Baby Bear is a Quality Improvement (QI) project that is employing rWGS for at least 100 acutely ill children enrolled in the Medi-Cal program at a minimum of four neonatal/pediatric Medi-Cal intensive care sites. Rady Children’s Hospital – San Diego in conjunction with Rady Children’s Institute for Genomic Medicine is evaluating the extent to which rWGS changes the cost of patient care and patient outcomes within four months of return of results. At the conclusion of the grant period, Rady Children’s Hospital will provide California’s State Department of Health Care Services a report of the cost of care and outcomes of children receiving rWGS compared to those not receiving rWGS. This is an interim report on the 115 children already helped in Medi-Cal.
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.
What a Year! 2018 Year In Review
"UC Davis Children's Hospital this month joins Project Baby Bear, the first California state-funded program to offer rapid whole genome sequencing (WGS) for critically ill newborns. The $2 million Medi-Cal pilot program will provide genome testing for babies under a year of age who are hospitalized in intensive care and suspected of having a genetic disorder."
"In September, Rady Children's launched Project Baby Bear with $2 million in funding from Medi-Cal (California's Medicaid health care program). The program will provide WGS testing for critically ill newborns across the state. Although Rady Children's Institute for Genomic Medicine has conducted WGS for more than 1,200 children since 2016, philanthropic donations had previously paid for most of the testing. Until Project Baby Bear, private insurance and Medi-Cal didn't cover WGS."
"Rady Children’s Hospital-San Diego is launching Project Baby Bear, the first California State funded program to offer rapid whole genome sequencing (WGS) for critically-ill newborns. The $2-million Medi-Cal pilot program will provide genome testing for babies hospitalized in intensive care....The program was championed by the California Legislative Rare Disease Caucus co-chaired by Assemblyman Brian Maienschein. He was among the lawmakers on hand for the program launch at Rady Children’s Hospital. Also attending was State Senate President Pro Tem Toni Atkins, Assemblyman Todd Gloria and State Secretary of the California Health and Human Services Agency Michael Wilkening."
Rare Disease Caucus Announces $2 Million Pilot Project in State Budget
The bipartisan Rare Disease Caucus announced today that the State Budget signed by Governor Jerry Brown includes $2 million to establish a California clinical pilot project to test a minimum of 100 Medi-Cal neonatal and other pediatric patients with undiagnosed diseases using clinical Whole Genome Sequencing. Whole genome sequencing is the process of determining the complete DNA sequence of a patient's genome at a single time.