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Hemophilia B Monthly
Empowering Through Education and Community
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From the CEO – April Reflections
April Showers Bring May Flowers… and Growth 🌿
This April, we came together for our Annual National Symposium (April 9–12) with an incredible turnout. Centered on our theme, "Whole You: Living Fully—Your health. Your path. Your power," the weekend offered programs for every age and stage of life. It was a powerful time of learning, connection, and community, helping each of us truly flourish.
We also recognized World Hemophilia Day (April 17), centered on this year’s theme: Diagnosis: The First Step to Care. Early diagnosis is critical- it opens the door to treatment, support, and better outcomes. Together, we continue working toward a future where everyone has access to timely diagnosis and care.
April is also National Volunteer Month, a time to celebrate the heart of our organization, you. Our volunteers make everything we do possible, bringing education, compassion, and connection to communities across the country. We are deeply grateful for your dedication and the impact you make every day.
We also extend our sincere appreciation to our partners and supporters, whose continued commitment helps make this work and moments like these possible.
As April comes to a close, we are grateful for the strength of our community, locally, nationally, and around the world. United in purpose, we continue to move forward, advancing awareness, strengthening connections, and expanding access to care for all who need it.
Near and far, we are all united, standing strong and moving forward together.
Best,
Kim
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Gene Path Weekend Retreat | |
Join us for a weekend retreat for me on Gene Therapy and for those considering Gene Therapy, ages 18 and over.
A thousand acres of quiet hills, open sky and natural beauty in Okalahoma’s Osage Hills - the perfect setting for men for men who are on gene therapy or considering it, to reflect, and share their experiences.
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We’re so thankful for our volunteers! 💙
At Symposium alone, 72 incredible volunteers showed up, and many more have supported us throughout the year. We simply couldn’t bring our in-person and virtual programs to life without you.
You are such a vital part of this community, and we’re truly grateful for each of you.
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We are thrilled to invite you to apply to be part of something truly historic: the first-ever Coalition for Hemophilia B Advocacy Education Summit, followed by a Hill Day where your voice will be heard where it matters most. This is a milestone moment for our community, and we want you to be a part of it.
This is not just a training, it is an experience designed to meet you exactly where you are. Whether you have been advocating for years or are just stepping into your power for the first time, this Summit was built for you.
Through this program, you will be guided by some of the best advocacy and coaching experts in the field. Together, we will:
✦ Build your self-confidence because your story is powerful and your presence matters
✦ Discover your superpowers and identify what makes you uniquely effective as an advocate, then fine-tune those strengths
✦ Gain real education and practical tools, from navigating insurance and the healthcare system to understanding how laws are made at the state and federal levels
✦ Walk away empowered with the knowledge, the network, and the confidence to advocate successfully for yourself, your family, and our entire community
Then we take it to Washington. Following the Summit, we will head to Capitol Hill to put everything we have learned into action, meeting with legislators and making sure the Hemophilia B community's voice is heard loud and clear.
We are so excited to have you join us for this groundbreaking experience. This journey is about becoming stronger for ourselves and for each other. Our community is extraordinary, and together, we are unstoppable.
Thank you for taking this step. Thank you for showing up for yourself, for your family, and for the thousands of others in the Hemophilia B community who benefit every time one of us raises our voice. We cannot wait to take this journey together.
With excitement and gratitude,
Kim Phelan
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Gene Therapy Support Network | |
For men with hemophilia B over 18.
Hosted by Bobby Wiseman
If you are a male with hemophilia B who is currently on gene therapy or thinking about gene therapy, we invite you to join our private group discussion.
You will hear directly from a member of our hemophilia B community who has experience with gene therapy. He will share his story and answer your questions in a safe, supportive setting.
Dinner vouchers will be provided.
Upcoming Dates
May 12th
June 9th
Sign up and let us know you’re coming.
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Meetings on the Road are educational, supportive, and free for all members who attend. Gas and toll expenses will be reimbursed, and meals will be provided.
Connect with your hemophilia B community! These events will take place all over the country, so find the one closest to you and come along.
This is a family-friendly event, so bring your loved ones and create new memories with your community. Whether you're new or a veteran, this gathering is for you.
Each meeting takes place on a Saturday and features a full day of exciting activities and interactive learning sessions. You'll have the chance to learn from distinguished speakers and share your experiences with other attendees on living with hemophilia B. We also have fun games and special experiences planned to keep us entertained and engaged.
Dallas, TX - May 16
Baltimore, MD - June 6
Kansas City, MO - June 13
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The Coalition for Hemophilia B Presents The 8th Annual BEATS Music Program Where music meets healing. Where community meets possibility.
For eight years, BEATS has been one of our most transformative programs for patients with Hemophilia B. And the research is clear: music reduces anxiety, eases depression, builds confidence, and strengthens connection. But our community already knows that.
BEATS is open to patients ages 13 and over. Whether you have never picked up an instrument or have been playing for years, this program meets you where you are. Instructors support every skill level in a welcoming, judgment-free environment. You do not have to be a musician to belong here. If you’re willing to learn, we are ready to teach you! You just have to show up. Music will do the rest.
Open to patients with Hemophilia B ages 13 and over. Ages 13 to 17 must attend with a parent or guardian.
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What if the biggest barrier to care isn’t access — but the words we use?
In this powerful and deeply personal conversation, Amber Federizo, APRN, DNP shares how language, stigma, and outdated clinical assumptions continue to shape — and often limit — care for women and girls with bleeding disorders.
Drawing from both her clinical expertise and a life-threatening personal experience, Federizo challenges long-standing terminology like “carrier,” exposes how bias shows up in emergency care, and offers a clear path forward: better questions, better language, and stronger advocacy.
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| The Coalition’s Annual Symposium brings together a distinguished faculty, including medical, research, mental health, and policy experts, alongside industry leaders and advocates. It provides attendees with education, mutual support, and a unique opportunity to connect with others on their path toward greater independence and success. Our event fosters a deeper sense of community and empowers individuals as they move forward in their careers and lives. | | | |
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Word of the Month
Prophylaxis/Prophy
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Prophylaxis is an attempt to prevent disease. In the case of hemophilia, a prophylaxis regimen of treatment is a proactive form of treatment where the individual infuses on a regular basis to prevent breakthrough bleeds.
A prophylaxis regimen attempts to keep the individual's clotting levels at a higher point in order to prevent bleeding episodes.
In the community people often use the shortened version of this word and say, "He is on prophy."
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Amazing honor to be recognized by the Radio Indie International Network! When we first started the Beats music program, Joe was the first one to step up to help us with very limited funding. He shows up every year to continuously make our program amazing. Congratulations to a man who is truly blessed with so much talent and gives his time to help others! See the list here!
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