Hemophilia B Monthly
Empowering Through Education and Community
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From the CEO – May Reflections
May is a wonderful month to focus on the maintenance of the mind, body, and spirit as we continue working to remove the stigma surrounding people seeking therapy, support, and mental health care. Just as we maintain and care for a car to keep it running properly, we must also care for our minds and bodies with compassion, attention, and support.
During Mental Health Awareness Month, we are reminded that asking for help is not weakness, it is strength. Taking care of ourselves emotionally and mentally is an important part of overall wellness.
We are also deeply thankful for the incredible nurses who touch our lives in so many ways. Especially within the hemophilia community, nurses provide not only medical support, but also comfort, education, advocacy, and compassion that make an enormous difference to patients and families every day.
During Teacher Appreciation Month, we celebrate the educators who help shape young minds and continue teaching and inspiring us throughout our lives. Their patience, dedication, and guidance help build stronger futures for generations to come.
And as we observe Memorial Day, we pause to honor and remember the brave men and women who served and sacrificed for our country. Their courage and dedication should never be forgotten.
May is truly a month to pause, reflect, maintain, and show gratitude. Let us continue to care for ourselves and one another with kindness, understanding, and appreciation throughout the year.
With Gratitude,
Kim
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Women's Education & Empowerment Program: Sept 17-20, 2026; IN PERSON LOCATION TBD
All selected applicants will receive a travel scholarship that includes airfare or mileage, lodging, and meals provided as part of the official event agenda.
The Hemophilia B Women’s Education & Empowerment Program is a unique three-day experience, during which women are given a safe space to share their journey with others and gain support.
All women attending benefit from the connections and learn strategies for managing hemophilia B through all life stages. Attendees continue to stay on the cusp of innovation through the education and resources provided. They are empowered by the journey they take together, provide each other with support not only during the retreat but on an ongoing basis, and stand ready to deal with life’s challenges!
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Men's Education & Empowerment Program: October 22-25; IN PERSON LOCATION TBD
All selected applicants will receive a travel scholarship that includes airfare or mileage, lodging, and meals provided as part of the official event agenda.
NEW! Built for Real-Life Schedules: Come in Thursday for an optional chill evening meetup, arrive Friday night, or roll in Saturday morning, whatever works best for your life and schedule. This experience was designed to meet you where you are, with meaningful conversations, interactive sessions, real connection, and time to recharge alongside other men who get it.
The Hemophilia B Men’s Education & Empowerment Program is more than a retreat, it’s a space to connect, laugh, learn, and talk openly with other guys navigating similar experiences in a supportive, judgment-free environment.
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May is Mental Health Awareness Month.
Mental health isn’t a race, it’s a marathon. It’s all about taking that first step, moving at your own pace, and remembering that the small steps truly matter.
We encourage everyone to check in on a friend, prioritize rest, seek support when needed, and help break the stigma surrounding mental health in our communities. No one should have to struggle in silence.
If you or someone you know needs support, these resources are available 24/7:
• 988 Suicide & Crisis Lifeline: Call or text 988
• Crisis Text Line: Text HOME to 741741
Mental health is health. Small actions, honest conversations, and community support can make a lasting difference.
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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
Sign up and let us know you’re coming.
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Medicare Patient Guide: Important Medicaid Coverage Alert for the Hemophilia B Community
Changes to Medicaid could affect access to coverage, treatment, infusion services, and specialty care for some people with Hemophilia B.
The Coalition for Hemophilia B has prepared a patient guide explaining what may be changing, who may be affected, and what steps you can take now to help protect your coverage.
Key action steps include:
- Update your contact information with your state Medicaid office
- Open and respond to every Medicaid notice right away
- Begin gathering documentation of your Hemophilia B diagnosis and treatment needs
- Contact your HTC, hematologist, or care team if you may need an exemption
- Reach out for help if your coverage is disrupted
CHB is actively advocating for bleeding disorders to be recognized as serious or complex medical conditions that may qualify for exemption from work reporting requirements.
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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.
Baltimore, MD - June 6
Kansas City, MO - June 13
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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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| | | Esta serie VIrtual está diseñada para la comunidad latina de hemofilia B, proporcionando un espacio dedicado a conectar, aprender y discutir temas clave que más te importan. Cada sesión contará con conversaciones con expertos médicos, defensores de pacientes y familias afectadas por la hemofilia B, que ofrecerán valiosos puntos de vista y experiencias de primera mano | |  | |
Introducing The Caregiver Thread, a Virtual event, on June 15. A space for caregivers across generations.
Whether you’re a parent, partner, or family member, this is a place to connect, share, and feel supported by others who truly understand.
We are stitched together by love, endurance, and compassion.
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Introducing Living B: The Men’s Collective, a Virtual space built for men living with hemophilia B and dads raising the next generation.
Whether you’re managing your own journey or showing up for your kid, this is where you can talk straight, learn what matters, and connect with guys who understand the day-to-day.
Because doing this alone isn’t how it’s meant to be.
Join us on June 30th at 8PM EST
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This is a Virtual community circle created for women living with hemophilia and those still on the journey to diagnosis.
Whether you've received a diagnosis or are still advocating for one, we are here to provide resources, offer support, and build a sisterhood rooted in strength, truth, and shared experiences. Because your voice matters. Your story matters. And you're not alone.
Join us on July 10th at 8pm EST
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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
Recombinant Factor
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An alternative to plasma-derived blood clotting factor. Recombinant factor products are made in a laboratory using recombinant technology. These products are not made from human blood.
Recombinant products offer a potentially safer option than plasma-derived products because they avoid potential blood-borne transmission of infectious diseases. In the United States, treatment with recombinant products is the standard of care.
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| | | Congratulations, Graduates! | |
Congratulations to Dr. Steven, PT, DPT, CSCS, on this amazing milestone! Your dedication, leadership, and passion truly shine through. We need more passionate physical therapists like you making a difference every day. | | Congratulations, Manny, who earned his Master's in Public Health from New Hampshire University with a 4.0 GPA! We can't wait to see what the future holds for you! |
| | | If you or a family member is graduating later this month, keep sending us those photos and we'll feature you in June! | | | | |
