The Coalition for Hemophilia B

🚨 Christian Harris is back! 🚨 Get ready for more surprising facts about your clothes! 👕✨ 🎥 This time, Christian dives into how iconic film looks are crafted and spills some insider tips on how to elevate your own wardrobe to movie-star status. 🌟 And trust us—if you haven’t heard Christian talk about pants, you are in for a treat! 😍👖 With an impressive background in fashion design, Christian has worked at top fashion houses and technical design firms—plus, he’s even replicated garments for TV and film studios for fun. 🎬 Currently, Christian serves as Principal Technical Designer on the Global Apparel Standards Team at Nike. 🏅 Don't miss this opportunity to learn from one of the best in the industry! 🎉

🚨 Advocating for Health Equity and Better Chronic Care Access! 🚨 The Coalition for Hemophilia B (CHB) is proud to strengthen our partnerships with larger advocacy coalitions to support the needs of the chronic disease community. 💪 Recently we signed onto three important letters to the Centers for Medicare & Medicaid Services (CMS), each emphasizing the need to advance health equity for underserved populations. 🌍✨ Here’s a breakdown of the key issues we’re supporting: 📋 Medicare Physician Fee Schedule (MPFS): Advocating for payment codes that promote health equity, strengthen primary care, and offer financial support to providers serving under-resourced communities. 🏥 Hospital Outpatient Payment System (OPPS): Supporting improved hospital quality measurement, accountability for health equity, and federal standards to address the maternal health crisis. 👶 Continuous Coverage for Children and Support for At-Risk Communities: Calling for 12 months of continuous Medicaid/CHIP coverage for children, protections for tribal and behavioral health providers, and Medicare enrollment access for formerly incarcerated individuals. CHB is committed to amplifying these critical efforts, working toward a future where everyone has access to the care they deserve. 🩸💙 Together, we can make a difference!

🌟 October Highlights from the Coalition for Hemophilia B! 🌟 Get ready for exciting events, including the 2025 Annual Symposium, a new Boundless B podcast episode, and a Gene Therapy support group! 🎧🎶 Plus, mark your calendar for special meet-and-greets, a virtual women's empowerment program, and parenting support events. 💙 Join the community, stay connected, and discover how you can make a difference! 🔗 Read the full BMonthly October edition https://ow.ly/onG950TOxG3

🎙️ New Boundless B Episode Alert! The Healing Power of the Drum with Dr. Robert Friedman 🥁 🎧 Listen now on Spotify, the website, or Apple Podcasts: https://lnkd.in/gSX2MrW5

Exciting News! 🎉 The FDA has just approved Pfizer’s Hympavzi (marstacimab), the first rebalancing agent available in the U.S. for people with hemophilia A and B without inhibitors. 💉

Today is #WorldMentalHealthDay, a reminder to prioritize mental well-being and break the stigma surrounding mental health conversations. 💚 Mental health matters just as much as physical health, yet it often goes unnoticed or unspoken. Let’s change that by fostering a culture of compassion, support, and understanding. Whether you’re taking a moment to check in with yourself, offering a listening ear to someone, or advocating for access to mental health resources, every action counts. Remember, it’s okay to ask for help, and it’s okay to rest. Let’s make mental health a priority every day. 🌱 #MentalHealthMatters #EndTheStigma #SelfCare #Support

Parents and caregivers, this one’s for you! Join our COO Kim Phelan on October 1 and October 24 for a meet and greet. We welcome those with children 0-17, as well as those with adult children. New members and lifelong members alike are encouraged to take part in our games & raffles and connect with our community! Kim can’t wait to chat, answer your questions, and have fun at this upbeat and engaging event. Register today: https://ow.ly/yM6a50T12E4

Proud parents, Mandy & Ryan, talk about how IXINITY® factor IX helps them manage their 12-year-old son’s severe hemophilia B. See their videos and others from people in the hemophilia B community at https://lnkd.in/gKsmmrWW. See full Prescribing Information and Important Safety Information at https://lnkd.in/grtWmbjG.

Join us on September 25th for a private group with patients 18 and over! Meet Aiden, Gene Therapy Recipient. Dinner vouchers are provided! The Coalition for Hemophilia B offers a private Gene Therapy Networking Group designed to empower and support patients with hemophilia B 18 and over who are considering or undergoing gene therapy. As gene therapy emerges as a revolutionary treatment with potential curative effects, CHB is committed to providing individuals with the guidance they need to navigate their treatment journey confidently. The network offers a dual-structured system that includes current gene therapy patients and those eligible for treatment. Learn more and register today- dinner vouchers provided: Register today! https://lnkd.in/gZiSVEAr

The Coalition for Hemophilia B is strengthening its relationships with larger advocacy coalitions to support the needs of the chronic disease community. Just this past week, CHB signed onto three letters addressed to the Centers for Medicare and Medicaid Services (CMS), focusing on the needs of the broader advocacy community. A common theme throughout these letters is the advancement of health equity for underserved populations. The first letter addresses the Medicare Physician Fee Schedule (MPFS), which is the list Medicare uses to reimburse physicians and providers for services under the program. The schedule covers payment rates for over 12,600 services. The letter, drafted by Families USA—a national healthcare advocacy coalition—and endorsed by several patient groups, emphasizes the importance of creating payment codes that promote health equity and deliver high-value primary care services. It also highlights the increased financial support needed for providers participating in the Medicare Shared Savings Program (MSSP), particularly those serving under-resourced communities. Lastly, it focuses on enhancing the connection between patients and providers accountable for both the cost and quality of care delivered. The second letter pertains to the Hospital Outpatient Prospective Payment System (OPPS), which governs payments hospitals and community health centers receive for outpatient care provided to Medicare patients. Developed by the Community First Coalition, the comments focus on two key areas: improving hospital quality measurement to ensure accountability in advancing health equity, and addressing the maternal health crisis by establishing federal quality standards for obstetric services. The third letter also relates to the OPPS and calls for the codification of 12 months of continuous coverage for children up to 19 years old in Medicaid and CHIP, while removing state authority to disenroll children for non-payment of enrollment fees or premiums. The letter advocates for extending the Medicaid “Four Walls” exception for Indian Health Services (IHS), tribal clinics, behavioral health services, and rural providers. It also calls for the eligibility and enrollment of formerly incarcerated individuals into Medicare. The Coalition for Hemophilia B is eager to continue partnering with national advocacy coalitions, lending our voice and support to these critical issues that aim to improve the health of all Americans.