Hemophilia Federation of America

Iron Deficiency in Women and Girls with Bleeding Disorders Webinar. 🗓 Date: May 19 ⏰ Time: 7 p.m. EST 🎤 Speaker: Dr. Kristina Haley, Director of the Oregon Health and Science University Hemostasis and Thrombosis Center. Join us for an important webinar with Dr. Kristina Haley, where we'll dive into the impact of iron deficiency and iron deficiency anemia in women and girls with bleeding disorders. These conditions are common, especially in individuals with bleeding disorders, but they can be managed with the right knowledge and care. Dr. Haley will explain how iron deficiency is diagnosed, treated, and what it means for your health. 🔗 Register now: https://hubs.li/Q03g8lfB0 Don’t miss out on this valuable opportunity to learn about a topic that can significantly improve the quality of life for many women and girls! #IronDeficiency #BleedingDisorders #HealthWebinar #WomenInHealth #AnemiaAwareness

🌟 Congratulations to Renita Johnson, our 2025 Volunteer of the Year! 🌟 Renita has gone above and beyond in her service to HFA and the bleeding disorders community. As a dedicated member of HFA’s Board of Directors, she’s been a guiding voice in Symposium planning, Board discussions, and always steps up when support is needed. She played a vital role as one of the founding members of HFA’s Diversity Working Group, continuing to champion DEI initiatives even after briefly stepping away from the Board. Her Human Resources expertise, solution-focused mindset, and unwavering dedication have made a lasting impact on our organization. Renita, thank you for leading with heart, lifting others, and showing us all what it means to serve. 💙👏

We want to hear from YOU! 📢 Help us make HFA Symposium even better by filling out our Post-Symposium Evaluation Form! Your feedback is invaluable in shaping next year’s event and ensuring we continue to meet the needs of our amazing community. 💬 Tell us what you loved, what we can improve, and what you want to see next year! It only takes a few minutes, and your voice truly makes a difference. 👉 https://hubs.li/Q03gB43x0 Thank you for being a part of Symposium—we appreciate you! 💙

🌍 Congratulations to Tamarrow Mitchell, our 2025 Michael Davon Community Service Award recipient! 🌍 Tamarrow’s dedication to global change has made a lasting impact, from combating climate change to improving sustainable agriculture. His journey has taken him across the world—spending months in St. Vincent and the Grenadines learning about plant life and liquid fertilizer, followed by six months in Zambia, where he educated farmers, distributed fruit plants and oak trees, and helped heal injured children. Despite facing challenging conditions, Tamarrow remained committed to uplifting communities, spreading awareness, and driving change. His work proves to the hemophilia community that no matter the obstacles, one person can make a global difference. Tamarrow, your passion, resilience, and leadership continue to inspire. Thank you for all that you do! 💙👏

🚨 Ask to RESTORE CUT SERVICES NOW! 🚨 On April 1st, the CDC eliminated the Division of Blood Disorders and Public Health Genomics and the Blood Disorders Surveillance and Epidemiology Branch — a devastating blow to the bleeding disorders community and public health as a whole. Why this matters: 🩸 Critical surveillance programs like Community Counts are gone – no more national data to track joint disease, comorbidities, or treatment effectiveness. 🧪 Specialized lab testing for inhibitor detection has been cut – impacting access for rural and underserved communities. 🧬 Blood safety monitoring weakened – risking a return to the “bad blood era” of the 1980s, when contaminated blood products devastated our community. 🚫 No transition plan, no explanation, no continuity. Decades of knowledge and public health infrastructure are being erased overnight. This is not a political issue — it's a public health crisis. Lives are on the line. 📢 We are calling on Congress to take immediate action: ✅ Restore funding and staffing. ✅ Investigate the decision-making process behind these cuts. ✅ Launch an emergency plan for critical service continuity. ✅ Meet with our community to understand the impact. The bleeding disorders community deserves protection, transparency, and a voice. We will not be silent. We thank our amazing community for being present and so supportive of the mission to ensure that we are heard, represented, and never forgotten. 📥 Download our advocacy toolkit: “How to Connect with Your Lawmaker” https://hubs.li/Q03gsNJX0 📲 Make the call. Send the email. Schedule the meeting. Tag your lawmakers.

🏆 Congratulations to Vincent and Maryann Fusaro, our 2025 Charles Stanley Hamilton Legacy Award recipients! 🏆 Vincent and Maryann have been pillars of the bleeding disorders community, dedicating their lives to improving access to care and supporting individuals with chronic conditions. Since 1983, they have been advocating, serving, and making a difference—from running a pharmacy on Long Island to launching The Alliance Pharmacy (TAP) with their son Mike and his wife Ayoung. TAP goes beyond providing medications—it’s a lifeline for those in need. Their mission to assist individuals with chronic diseases, offer medications at reduced costs, and fund research and education has led to $2.4 million in grants to 27 organizations since 2013—with plans to double that in the next five years! Vincent and Maryann, your compassion, dedication, and generosity continue to uplift the bleeding disorders community. Thank you for all that you do! 💙👏

On this day 35 years ago, Ryan White lost his battle with HIV/AIDS at the age of 18. During the 1980s, Ryan bravely became a national spokesperson and symbol of hope for the hemophilia and HIV/AIDS community after being expelled from middle school due to community fears the virus would spread to other children. Today, his mother Jeanne continues to work tirelessly to spread Ryan's message and advocate for all individuals who are suffering. We remember Ryan everyday, but especially today. ❤️ 🩸

🌟 Congratulations to Kason Loving, our 2025 Leaders of the Future Award recipient! 🌟 At just 12 years old, Kason has already made a tremendous impact in the bleeding disorders community through his advocacy and leadership. Since joining the Iowa chapter in 2020, he has spoken before state legislators, shared his personal story, and even demonstrated how to infuse—all to raise awareness and fight for better care. His powerful advocacy at Iowa State Advocacy Days and Washington Days 2024 left a lasting impression, including moving a legislator so much that she invited him to vote on the House floor! Kason, your honesty, courage, and dedication are truly inspiring. You are setting an example for the next generation of advocates, and we can’t wait to see all that you accomplish in the future! Thank you for all that you do! 💙👏

🌟 Congratulations to Shari Luckey, our 2025 TEA Award recipient! 🌟 Shari has dedicated her life to Teaching, Empowering, and Advocating for women and teens with bleeding disorders. From founding Ruby Connection, a virtual space for women and caregivers, to playing a key role in launching the National Women’s Conference, Shari ensures that women in our community have the resources, support, and medical guidance they deserve. Her impact extends globally—working with organizations like Days for Girls and Save One Life, she fights against period poverty, menstruation stigma, and lack of access to bleeding disorder resources. She’s also been instrumental in ensuring children with bleeding disorders in international adoptions receive proper care. Shari, your passion, leadership, and advocacy continue to change lives, and we are honored to celebrate you! Thank you for all you do! 💙👏

🏆 Congratulations to Dr. Jonathan C. Roberts, our 2025 Ron Niederman Humanitarian Award recipient! 🏆 Dr. Roberts has made groundbreaking contributions to the diagnosis and treatment of von Willebrand Disease, hemophilia, and rare bleeding disorders. His research in novel laboratory assays and commitment to advancing clinical care have significantly improved patient outcomes. As both a respected scientist and someone living with severe hemophilia A, Dr. Roberts brings a unique and compassionate perspective to his work. His leadership in clinical trials, cutting-edge treatments, and advocacy has made a lasting impact on the bleeding disorders community. We are honored to recognize Dr. Roberts for his tireless dedication and humanitarian spirit. Thank you for all you do! 💙👏