Latest news with #AlmaHernandez
Yahoo
13-05-2025
- Health
- Yahoo
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 PHOENIX, May 13, 2025 /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. View original content to download multimedia: SOURCE National Organization for Rare Disorders (NORD®) Sign in to access your portfolio
Fox News
12-05-2025
- Politics
- Fox News
Swing state outlaws college protest encampments amid nationwide campus crackdown on anti-Israel agitators
Arizona lawmakers have outlawed encampments on public university campuses as protests continue to erupt at schools across the United States. Democratic Arizona Gov. Kate Hobbs last week signed House Bill 2880, which bars people "from establishing or occupying an encampment on a university or community college campus." The law also requires school administrators to direct people who set up encampments to "immediately dismantle" them or vacate the campus. Those who set up encampments may be held liable for damages to campuses, and those who do not leave are subject to trespassing charges. Law enforcement agencies "must enforce the prohibition on establishing or occupying an encampment," the law states, and they have "the authority to remove an encampment and any individual or group from campus that has violated the prohibition and refused to comply with the direction to leave." Democratic Arizona State Rep. Alma Hernandez introduced the bill, saying in a statement when it passed the Education Committee in February that the legislation "is not about silencing anyone's right to protest." "You still have the right to protest peacefully, but encampments do not have a legal right to be on campus," Hernandez said at the time. Hernandez added that the idea behind the legislation stemmed from the Oct. 7, 2023 attack on Israel when Hamas, a designated terrorist organization, killed 1,200 people and kidnapped hundreds of hostages from a music festival. Hamas is a designated terrorist organization that the Department of National Intelligence describes as "the largest and most capable militant group in the Palestinian territories and one of the territories' two major political parties." The offensive sparked the ongoing war between Israel and the terror group. Meanwhile, students at colleges and universities across the country have participated in large-scale, anti-Israel protests that have, at times, resulted in physical clashes between students and police. "After October 7th, our universities faced significant challenges as they tried negotiating with individuals who made unrealistic demands and refused to remove their encampments," Hernandez said. "I witnessed the impact of this firsthand. As a student and a faculty member, I firmly believe in the importance of civil conversations and peaceful protests—these fundamental rights protected by the First Amendment. However, encampments have no legal standing on our campuses.""We must prioritize accountability and ensure that our public institutions remain focused on providing a safe and secure environment," she continued. "These institutions' primary obligation is to support teaching and learning for ALL students. Jewish students should not have to hide or take alternate routes just to get to class." Various Democratic lawmakers and activist organizations opposed Hernandez's bill, including CAIR-AZ and ACLU Arizona, which described the bill as an effort to "curb free speech at a time when we must firmly protect people's right to dissent." President Donald Trump has threatened to pull federal funding from schools over antisemitism concerns and deport students who participate in demonstrations expressing support for terrorist organizations. "To all the resident aliens who joined in the pro-jihadist protests, we put you on notice: come 2025, we will find you, and we will deport you," the president said in a Jan. 30 fact sheet on the executive order. "I will also quickly cancel the student visas of all Hamas sympathizers on college campuses, which have been infested with radicalism like never before."
