Arizona Becomes the 31st State With a Rare Disease Advisory Council

New State Council Will Help Shape Health Policies for Arizonans Living with Rare Diseases

, /PRNewswire/ -- The National Organization for Rare Disorders (NORD®) celebrates a significant milestone for the rare disease community as Arizona Governor Katie Hobbs has signed House Bill 2380 into law, establishing the Arizona Rare Disease Advisory Council (RDAC).

This legislation, introduced by Representative Alma Hernandez, supported by the National Organization for Rare Disorders (NORD®) and patient organizations from Arizona and across the United States, brings new hope to rare disease patients across the state by ensuring a dedicated body to address their unique healthcare needs.

"The establishment of Arizona's Rare Disease Advisory Council represents the power of grassroots advocacy and community collaboration," said NORD Chief Executive Officer Pamela K. Gavin. "From passionate patients and dedicated clinicians to committed lawmakers, Arizonans came together with a unified voice to create meaningful change. NORD is immensely proud to have supported this community-driven initiative. This council will ensure that the unique challenges faced by rare disease patients and families in Arizona are not only heard but addressed through informed policy and dedicated action."

"I am proud to have been able to work with the stakeholders and those living with rare diseases for the last two years to make this legislation possible," said Representative Alma Hernandez. "It is time for Arizona to move the needle and find ways to support this community. This committee will allow for new recommendations for lawmakers to better support this community. I look forward to the first convening and the ability to learn from the experts in this field, improve the lives of others, and develop better policies to diagnose and treat Arizonans living with a rare disease."

With the governor's signature on May 12, Arizona becomes the 31st state with an RDAC. The council will include dedicated stakeholders from across the rare disease landscape, including physicians and other health care providers, patients, caregivers, researchers, and members of the pharmaceutical and insurance industries. The membership of the RDAC will reflect the unique geographical and population of Arizona.

"As both a rare disease patient and a provider for children with medically complex and rare conditions, I'm excited to see Arizonans gain a stronger voice in future policy," said Melissa Meyer, DNP, a NORD volunteer. "My rare disease didn't happen to me — it happened for me. It gave me the empathy to better support my patients and the inspiration to teach future nurse practitioners how to advocate. I'm deeply grateful for this journey and hopeful about the impact the RDAC will have." 

Of the more than 10,000 known rare diseases, only approximately 5% have a Food and Drug Administration (FDA)-approved treatment. Diagnosis can take years for many rare disease patients, and their direct medical costs are three to five times higher than someone of similar age without a rare disease. This council will serve to educate lawmakers and state agencies about these challenges and provide recommendations for policies that benefit the more than 30 million Americans living with rare diseases, including approximately one in 10 Arizonans.

The Arizona RDAC will work to improve patient access to specialists, affordable healthcare coverage, timely diagnostics, and necessary treatments through policy recommendations and public education initiatives.

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

With a 42-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 30 million Americans living with a rare disease. A nonpartisan, 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 350 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. 

SOURCE National Organization for Rare Disorders (NORD®)