Council will advise and advocate on the needs of California’s rare disease community
SACRAMENTO, CA, SEPTEMBER 30, 2024 — California Governor Gavin Newsom signed into law AB 2613, legislation that creates the Jacqueline Marie Zbur Rare Disease Advisory Council (RDAC). Named in honor of Assemblymember Rick Zbur’s sister who battled amyotrophic lateral sclerosis (ALS), Assemblymember Zbur introduced AB 2613, which was championed by the National Organization for Rare Disorders (NORD) and 35 other patient organizations, to establish a dedicated Council to address the needs of Californians affected by rare diseases.
With Governor Newsom’s signature, California becomes the 29th state to create an RDAC. The California RDAC will include a diverse group of members from the rare disease community including patients, caregivers, healthcare providers, researchers, and pharmaceutical and health insurance companies that educate and advise lawmakers about rare disease and make recommendations on how to improve access to critical healthcare and other services.
“Rare disease impacts 1 in 10 Californians. For Assemblymember Zbur, this is not just a statistic. He knows firsthand the heartbreak and burden rare disease patients and families face as they navigate a complex healthcare system,” said NORD CEO Pamela Gavin. “We are immensely grateful to him for championing this legislation and to the Governor for signing it into law and giving the California rare disease community a vital voice in guiding state policy that will help transform and save lives.”
Nationwide, more than 30 million Americans have a rare disease, defined as any disease that impacts fewer than 200,000 people. Of the more than 10,000 known rare diseases, only approximately 5% have an FDA-approved treatment.[i] Getting an accurate diagnosis can take years for some rare disease patients and their direct medical costs have shown to be three to five times higher than someone of similar age who does not have a rare disease.[ii]
“I am deeply grateful to Governor Newsom for signing into law AB 2613, a bill to create a Rare Disease Advisory Council (RDAC), named after my late sister Jackie Zbur,” said Assemblymember Rick Chavez Zbur (D-Hollywood). “This moment is profoundly personal for me, as my sister Jackie is the reason I ran for office in the first place. Near the end of her battle with ALS, she made me promise her to pursue public service to use my voice to help others. Your organization’s support of this bill honors her legacy and ensures that the rare disease community in California will finally have the platform it deserves. I am especially thankful to NORD for its tireless advocacy and partnership in making this bill a reality. With this, we take a significant step toward fulfilling my promise to Jackie—to make a real difference for families facing these challenges, just as she hoped.”
“The sad truth is the hardships families like mine face across California and the US are all too common. Parents like me often feel invisible and lost,” said Mike Hu, an Oakland resident with two sons both living with a rare disease. “But our family has never lost hope. California’s new Rare Disease Advisory Council will make a meaningful difference in the lives of those impacted by rare diseases and build a future where no rare disease patient is left behind.”
On Friday, September 27, Governor Newsom declared California as the second state this year to establish an RDAC, after Mississippi earlier this year. In 2020, NORD launched Project RDAC to expand the number of states with an RDAC and to optimize the existing RDACs to ensure their benefit to the rare disease community.
“Our incredible advocates played a vital role in pushing AB2613 forward and making the California RDAC a reality, both in-person at our first-ever lobby day, and through countless letters and emails to lawmakers. An extra special thanks to the RDAC Coalition Steering Committee members for their unwavering commitment and leadership. Together, we’re making a difference for the rare disease community in California,” stated Lindsey Viscarra, NORD State Policy Manager.
Individuals can get involved and support their state’s rare disease community by joining NORD’s Rare Action Network® and learning more about NORD’s Project RDAC and Rare Disease Advisory Councils.
About the National Organization for Rare Disorders (NORD)
With a more than 40-year history of advancing care, treatments and policy, the National Organization for Rare Disorders (NORD) is the leading and longest-standing patient advocacy group for the more than 30 million Americans living with a rare disease. An independent 501(c)(3) nonprofit, NORD is dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 340 patient organization members, is committed to improving the health and well-being of people with rare diseases by driving advances in care, research and policy.
[i] https://doi.org/10.1186/s13023-023-02790-7
[ii] https://ojrd.biomedcentral.com/articles/10.1186/s13023-021-02061-3