Hemophilia Federation of America

What is a Bleeding Disorder? A bleeding disorder means your blood doesn’t clot properly. This can happen when there's a problem with a clotting factor or platelets – proteins in your blood that help control bleeding. Without proper clotting, uncontrolled bleeding can be painful and lead to long-term consequences. But here's the good news: Many bleeding disorders can be managed with treatment! Hearing the word "diagnosis" can be overwhelming, especially when it’s for a chronic condition. But it’s important to know that people with bleeding disorders can lead full, healthy lives. You’re not alone in this journey! 🌟 If you or a family member suspect you may have a bleeding disorder but haven't been diagnosed, it's crucial to contact your healthcare provider for testing and a referral to a hematologist or a Hemophilia Treatment Center (HTC). Early diagnosis can truly make a difference. 💙 Visit our Bleeding Disorders 101 to learn more https://hubs.ly/Q038TKC_0

March is Bleeding Disorders Awareness Month! We are kicking off this important month by sharing content to honor the history of bleeding disorders and raise awareness for those living with them. 🩸 March 1st Fact: In the United States, over 3 million people have bleeding disorders, including hemophilia A, B, C, von Willebrand disease, and other ultra-rare disorders. 🎗️ How can you show your support this month? • Share our new "I Love Someone with a Bleeding Disorder" graphics on socials to spread awareness: https://hubs.li/Q038TLt80 • Or purchase an I Love Someone with a Bleeding Disorder t-shirt at our limited-time store with proceeds benefitting our Helping Hands program and MATCHED by the Alliance Pharmacy: https://hubs.li/Q038TJCx0 Of course celebrate the festivities with HFA at Symposium March 27-30! https://hubs.li/Q038TM1M0 Together, we can spread awareness and support those affected.

Today is Rare Disease Day. Let’s take a moment to raise awareness about Hemophilia, a rare bleeding disorder that affects over 30,000 people in the U.S. Hemophilia B, in particular, is quite rare. Out of the 30,000 Americans with hemophilia, only about 7,000 have Hemophilia B. Common symptoms include: 🩸 Bleeding into muscles and joints (pain & swelling) 🩸 Nosebleeds 🩸 Prolonged bleeding from cuts, dental work, or surgery 🩸 Easy bruising 🩸 Blood in urine or stool 🩸 Gastrointestinal & urinary tract bleeding 🩸 Unexplained bleeding 🩸 Large bruises/hematomas 🩸 Heavy menstrual bleeding (Menorrhagia) If you or a family member experience any of these symptoms and haven't been diagnosed, it’s important to reach out to your healthcare provider for testing and a referral to a hematologist or Hemophilia Treatment Center (HTC). Early diagnosis can make all the difference.

Important Health Alert for the Community. We are aware of a voluntary, non-life-threatening recall of Altuviiio lot #EY0330 due to incorrect labeling on dose potency for one lot of product. Sanofi has informed U.S. medical providers about this recall under MASAC Medical Advisory #430, and we have shared the official statement from the California Board of Pharmacy for more details. 🩺 Key Details: Issue: Mislabeling on dose potency in one lot of Altuviiio. Impact: No clinical outcomes are expected to be affected, but we encourage you to reach out to your medical provider if you have any concerns. Read the news here: https://lnkd.in/evwQsurf HFA remains committed to keeping you informed about changes to healthcare policy, access, treatment, and important medication updates.

March is Bleeding Disorders Awareness Month! We’re excited to share brand new graphics to help spread awareness and show your support for the bleeding disorders community. Your voice can make a difference in raising awareness, promoting education, and empowering those affected. 📲 Download and share the new graphics to show your commitment to raising awareness throughout March! https://hubs.li/Q038btMV0 Join us in March as we shine a light on our community! Together, we can increase understanding, and bring awareness to all living with bleeding disorders.

Ashley Lacy, a dedicated public health professional and nurse living with von Willebrand disease (vWD), has devoted much of her adult life to supporting the bleeding disorder community. She actively serves on the board of her local chapter, the TN Hemophilia and Bleeding Disorder Foundation (THBDF). Driven by a strong sense of purpose, Ashley's mission is to serve and assist her community in any way she can. Join us for a conversation with Ashley as she shares her powerful lived experience as an African American woman navigating life with a bleeding disorder. In this discussion, HFA Education Manager Robyn Kebede sits down with Ashley to explore the unique challenges, triumphs, and insights that come with this journey. Read about Ashley's journey here: https://hubs.li/Q038ffZK0

This week, the House of Representatives is expected to consider a budget resolution that would cut $880 billion, primarily from Medicaid. This would directly impact the almost 80 million people across the nation who rely on Medicaid and CHIP for healthcare. 38 national patient advocacy organizations, including HFA, are speaking out, urging lawmakers to vote NO on this resolution. 🎙️"We strongly oppose the House budget resolution. These cuts would decimate Medicaid, taking healthcare away from seniors, children, and people with disabilities and chronic health conditions. There’s no way to make these cuts without devastating consequences." Read the full statement here: https://hubs.li/Q038fL-r0 🗣 Take action now! Reach out to your lawmakers and urge them to vote NO on any legislation that threatens Medicaid access. We have a link that will connect you to your US Representative so you can make a CALL THAT COUNTS. 📞 Take action: https://hubs.li/Q038dRJJ0 Our healthcare is at risk, and we need to fight for it. ✊ Make sure you sign up for our advocacy network to be involved in all things bleeding disorders, and how we can help shape the future of healthcare. Sign up here 👉https://hubs.li/Q038dgl60 #ProtectMedicaid #NoCuts

Celebrating Dr. Carletha Gates: A True Servant Leader in the Bleeding Disorders Community. This Black History Month, we honor Dr. Carletha Gates, PhD, MPA, HS-BCP, a dedicated advocate and educator who has devoted over three decades to serving families affected by hemophilia and bleeding disorders. Dr. Gates is the founder and Executive Director of the United Hemophilia Foundation (UHF), a nonprofit organization in Georgia that serves individuals with hemophilia and other rare bleeding disorders. Her tireless work as a volunteer, board member, and committee leader across various organizations has made a lasting impact on the bleeding disorders community. We salute Dr. Gates' compassion, leadership, and unwavering passion to uplift and empower the bleeding disorders community.

Symposium has everything for the bleeding disorders community under one roof. • Educational sessions covering severe, mild, and rare cases. • Rap Sessions for men, women, parents, and Spanish-speaking communities. • Explore the latest products & services designed to improve your life. • Child and teen programs to provide leadership, confidence, and advocacy. • Fun events and relaxation. Don’t miss out on the opportunity to connect and learn with experts and peers! Join us for an inspiring experience at Symposium 2025! https://hubs.li/Q037Z1qx0 Thank you to the following 2025 Symposium Sponsors: Novo Nordisk • Takeda • Sanofi • Genentech • Bayer • CSL Behring • Pfizer • Accredo by Evernorth

New Year, Same State Leadership (Mostly). The federal landscape has certainly shifted coming into 2025; however, the composition of state governments has only changed very slightly. While more federal initiatives are on the horizon with a new Presidential Administration, let’s look at how the states will help or hinder those efforts in the latest edition of HFA State of the States. Read here 👉https://hubs.li/Q037MpCh0 Make sure you sign up for our advocacy network to be involved in all things bleeding disorders, and how we can help shape the future of healthcare. Sign up here 👉https://hubs.li/Q037MqRN0