The Coalition for Hemophilia B

We have received countless stories from women who were dismissed when they knew something was wrong. We will be sharing these stories with you this month in honor of International Women’s History Month. One community member wrote in: “Here are some of the comments I’ve received over the years and recently dismissing my bleeding disorder (not in any particular order): 1. It’s not Christmas disease. She’s just a bleeder. (said to my mom when I was a kid) 2. 30% [FIX assay level] should be protective. There’s probably some other reason for your bad periods. (This, after undergoing repeated exams and imaging that revealed other reproductive complications, none of which would cause menorrhagia.) 3. You can’t prove that damage is from bleeds. (After telling a PBM “expert” that we have imaging of joint damage from bleeds.) 4. You don’t need prophylactic care. If you have a bleed, you need to have it imaged to prove there is a bleed. If you don’t get it imaged, or if there is no bleed, we will not replace the dose. 5. Women don’t get hemophilia. 6. To have access to your factor, you must be under 1% and have at least two documented spontaneous bleeds. 7. Your clotting factor is determined not to be medically necessary.” -Coalition of Hemophilia B Community Member Let’s be a part of the change. Speak up. Advocate. #womenbleedtoo #womenbleeders #hemob #hemophiliab #advocacy

The Hemophilia Alliance is proud to offer the Joe Pugliese Educational Award, a scholarship designed to support members of the bleeding disorders community in achieving their academic dreams. This award provides financial assistance to individuals pursuing post-secondary education, whether it’s a college degree, vocational training, or other educational pursuits. Applications due March 31, 2025. Apply Today: https://lnkd.in/g9sYaiU #scholarship #hemob #bleedingdisorders

An injury directly activates the factor VII pathway in the clotting cascade. Why isn’t this enough to form a good clot? a. The body quickly runs out of activated factor VII b. The factor VIII/IX pathway is needed to amplify the signal from the injury to provide enough clotting c. Bypassing agents provide enough additional activated factor VII to keep the factor VII pathway going long enough to produce a clot. d. All of the above

Our Women’s Retreat Has a New Look—And a Deeper Purpose We’re excited to invite you to our revamped, nature-inspired retreat—a unique program designed for women with bleeding disorders and caregivers. Set in a peaceful, welcoming environment, this sponsored retreat offers more than just connection—it provides expert-led education, valuable resources, and empowering tools to help you better navigate life with a bleeding disorder. You’ll learn, grow, and share alongside others who truly understand your journey—all in a safe space surrounded by the calming touch of nature. Applications are now open! Don’t miss this opportunity to be part of something meaningful: https://lnkd.in/edYmXaPz #WomensRetreat #EducationAndEmpowerment #BleedingDisorders #SponsoredSupport #StrongerTogether #NatureAndHealing

Ready to Make Some Music? We’re excited to launch an incredible music program for all ages 14 -17 (accompanied by one parent) to 101—whether you’re just starting out or a seasoned pro! This program is open to all skill levels and is designed to meet you where you are. More than just music, it’s about mentorship, community, and joy. Many participants have shared how it’s improved their quality of life—and now it’s your turn! Join us and let’s make music together. Because every voice—and every note—matters. The Beats Music Program will be held on July 16-20, 2025, in Nashville! Apply today: https://lnkd.in/eqqsFNFG #thebeats #hemob #hemophiliab #musicprogram #MusicForAll #CommunityThroughMusic #HealingWithHarmony #JoinTheRhythm

In honor of #socialworkerappreciationmonth we want to thank all of those Social Workers who are making a difference in the hemo B family and the greater community at large. We are grateful for you! #hemob #socialworkers #community

Inhibitor treatment products are called bypassing agents because they bypass the need for factors VIII and IX. How do they work? a. They use already-activated clotting factors to directly activate factor X, which is normally activated by factors VIII and IX b. They directly convert fibrinogen to fibrin to form a clot. c. They directly convert prothrombin to thrombin which then converts fibrinogen to fibrin d. They directly activate platelets so the clotting factors aren’t needed

Considering Gene Therapy for Hemophilia B? You are not Alone! The Gene Therapy Support Network is here to guide and empower you on your journey. As this revolutionary treatment brings new hope, it also comes with big decisions and emotions. That’s why The Coalition for Hemophilia B is committed to providing support, guidance, and real connections whether you’re exploring options or currently undergoing treatment. Connect with others and gain expert insights. Feel supported every step of the way. Learn more and apply today: https://lnkd.in/eQif3tH9 #genetherapy #hemob #hemophilia

Join us for our National Nutrition Month Challenge, where we focus on building balanced, nourishing meals that fuel your body and mind! ???? Why it matters: A well-balanced plate keeps the body healthy, energy steady, and supports a healthy digestion. What to do: Kick off the challenge with us and Holistic Nutritionist Vanessa Harris on Monday, March 24th! ??We’ll dive into why balanced nutrition matters, break down this fun week-long challenge's details, and explain how you can enter to win a raffle prize by participating! Don’t miss out! ???? Need ideas? We’ll be sharing easy recipes and pro tips to help you build better meals effortlessly! ?? The challenge starts March 24th! Ready to eat smarter and feel amazing? Comment "I'm in!" and join us in the B-Hub: https://connect.hemob.org/ #BalancedPlateChallenge #NationalNutritionMonth #HealthyEating #FuelYourBody

What is considered the threshold for diagnosing a woman with hemophilia instead of being classified as a carrier? a) Factor levels below 40% b) Factor levels below 50% c) Factor levels below 60% d) Factor levels below 70%