A National Non-Profit Organization Serving the Hemophilia B Community for over 35 Years

Dear Friends,

As we move into spring, we are reminded of what this season represents—renewal, growth, and forward momentum. March held special significance for our community as we recognized Bleeding Disorders Awareness Month a powerful reminder of both the challenges we face and the incredible people who stand alongside us every day. And now in April, Volunteer Appreciation Month is here, along with World Hemophilia Day that we just recognized on April 17.

This moment is about visibility and voice. Across the hemophilia B community, individuals and families continue to share their lived experiences, advocate for better care, and push for greater understanding. Awareness is not just about recognition—it is about action, education, and ensuring that every person impacted by hemophilia B is seen, heard, and supported.

March was also a time to celebrate the dedicated social workers who play such a vital role in our community. Their compassion, expertise, and unwavering commitment help individuals and families navigate complex systems, access critical resources, and find strength in moments that can feel overwhelming. We are deeply grateful for the care and advocacy they bring to this work.

As we launch this latest E-News, we are excited to continue building connection, sharing knowledge, and elevating the voices that make this community so strong. From educational opportunities to community stories and advocacy efforts, everything we do is rooted in a shared commitment to progress and support.

What makes the Coalition for Hemophilia B so impactful is you- your willingness to engage, to speak up, to support one another, and to keep moving this work forward. “Together” is not just something we say, it is how we create change.

Thank you for being part of this community and for the role you play in advancing awareness, care, and connection.

With appreciation,

The Coalition for Hemophilia B Team

Gene Path Weekend Retreat | June 4–7, 2026 | Tulsa, OK

Real People. Real Experiences. Real Connection.

For men living with Hemophilia B, gene therapy is more than a medical option. It is a life-changing crossroads, and no one should navigate that decision alone.

Gene Path Weekend Retreat was created exclusively for men 18 and over who are on gene therapy or actively considering it.

Set against a thousand acres of quiet hills and open sky in Oklahoma’s Osage Hills, this intimate weekend brings together men who truly understand, because they are living it.

What this weekend is, and what it is not.

This is not a sales pitch. There are no slide decks, no pharmaceutical presentations, and no pressure. CSL Behring is a proud funding partner, but this weekend belongs entirely to the patients. The agenda is intentionally light, the conversations are honest, and the most important moments will happen around a campfire or on a morning walk.

A Glimpse at the Weekend

Thursday evening — Arrive, settle in, and gather around the opening campfire. One question to start: “What brought you here this weekend?”

Friday — A leisurely morning with optional nature walks, fishing, or kayaking — followed by an open, no-filter conversation with a hematologist Dr Chris Walsh. Every question is welcome, including the ones you’ve been afraid to ask.

Saturday — Small-group conversation circles where men on gene therapy and men considering it talk honestly about real life. What changed. What surprised them. What they wish they’d known. The afternoon brings a dedicated session with a life coach — a real conversation about the emotional side of this decision that rarely gets its own space.

Sunday — A closing circle. One final question: “What are you taking home from this weekend?” Then home — with a community that didn’t exist before Friday.

All travel, lodging, and meals are covered. Apply by April 30.

Apply to attend 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 — identify what makes you uniquely effective as an advocate and 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 level

✦  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.

All selected applicants will receive a travel scholarship that includes airfare or mileage, lodging, and meals provided as part of the official event agenda.

THANK YOU for joining us at the Coalition for Hemophilia B's 2026 Annual Symposium, both in Las Vegas and virtually!

From inspiring speakers and engaging exhibitors to unforgettable moments of connection, learning, and laughter — this year’s Symposium was truly special.  It was amazing hugging you, sharing meals, and growing together as a community.

Our symposium would not be possible without the commitment of our valued partners. Thank you for investing in the Hemophilia B community.

We can’t wait to see you at more events this year, and of course, at our 2027 Symposium!

Hemophilia Landscape Updates

• Trends in Mortality Among Bleeding Disorder Patients in the U.S.
• Cardiovascular Disease in Hemophilia
• Subclinical Atherosclerosis in Adolescents with Severe Hemophilia
• An Online Self-Administered Bleeding Assessment Tool (Validated for Women, Too!)
• Treatment Preference for Prophylaxis
• Kidney Function and Damage in Hemophilia Patients

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.

Each city will follow a similar event structure, though the arrangement of speakers and staff may vary. Below is a general timeline to help you plan your family’s travel and attendance. Please note that some details are subject to change. All registered attendees will receive a personalized agenda closer to the event date, including additional information on the venue, meals, and kids’ trip. Times are listed in the local time zone of your selected city.

Upcoming Locations:

• May 16: Dallas, TX
• June 6: Baltimore, MD
• June 13: Kansas City, MO

Gene Therapy Rap Sessions

For men with hemophilia B over 18.

If you’re considering gene therapy or already involved, we invite you to join our private group discussion with a member of our hemophilia b community. We’ll share firsthand experiences and answer all your questions. Plus, dinner vouchers will be provided! Sign up and let us know you’re coming

Upcoming Dates

• April 28
• May 12
• June 9

In the Community

Congratulations, Dr. Roshni Kulkarni, on this incredible and well-earned honor. Your commitment to women and girls with bleeding disorders has made a profound and lasting impact. You lead with knowledge, heart, and purpose, and so many of us are better because of you. Grateful for all you do and proud to see you recognized on this global stage.