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

Dear Friends,

A new year brings fresh energy, new possibilities, and renewed purpose. As we step into 2026, we do so with gratitude for where we have been, confidence in what we have built together, and optimism for what lies ahead. Together, we continue to move forward, forging new paths, strengthening our voices, and meeting this moment with resolve and hope.

As we reflect on everything we accomplished in 2025, we are deeply grateful for this community and the collective strength that carried us through a year of significant uncertainty in healthcare policy, particularly for individuals and families affected by bleeding disorders. Once again, our community rose to the challenge, sharing lived experiences, speaking out against harmful practices, and advocating for equitable, informed care.

Together, we expanded education and connection across the hemophilia B community. More than 1,250 individuals participated in our Annual Symposium and Meetings on the Road. Our virtual educational programs reached their highest engagement to date, demonstrating the power of accessible, year-round learning, connection, and support.

What we are building at the Coalition for Hemophilia B is truly special, and it exists because of you, your willingness to show up, share your journey, support one another, and invest in the strength of this community. For CHB, “together” is not just a guiding principle, it is the foundation of everything we do.

Thank you for your time, your trust, and your commitment. Thank you to our volunteers, advocates, partners, and families who make this work meaningful and impactful. We are deeply grateful for each of you and proud to stand alongside you as we move forward into a new year.

With appreciation and hope,

The Coalition for Hemophilia B Team

Jan 22, 2026 - Virtual

Adulting Unlocked

Career Building Workshop

Join us for a fast-paced, power-packed virtual workshop where we’ll dive into everything you need to stand out professionally: resume glow-ups, LinkedIn optimization, interview confidence, and real-world career strategies that actually work. 

New Jersey Joins Growing List of States Passing Copayment Accumulator Bans

By Kim Phelan

With the passage of the legislation in New Jersey, the state joins 25 other states, as well as the District of Columbia and Puerto Rico, that have passed copayment accumulator bans.

Read the full press release here -> View

Copayment Accumulator legislation is pending in 14 states including California, Pennsylvania, Missouri and South Carolina. 

This week patient advocates in South Carolina are hosting their annual legislative breakfast focusing on passing the H.3934/S. 330, the copayment accumulator ban. 

Federally, the HELP Copays Act (HR 6423) was reintroduced in the House of Representatives before the Christmas holidays. Legislation is advancing in states and in Congress. 

In Loving Memory of Patrick Collins

By Kim Phelan

With profound sadness, we share the passing of Patrick Collins, who passed away on December 19 after a courageous battle with cancer.

Wayne and I had the privilege of working alongside Patrick in the community for more than 30 years, and sharing such a long friendship with him is something we will always treasure.

Patrick was truly one of the good ones. He showed up, he cared deeply, and he lived his values quietly and authentically. Knowing him for so many years was a gift we will never take for granted.

Reading the hundreds of messages shared in his memory has been incredibly moving. Again and again, people expressed the same sentiment in different ways, Patrick was one of the good ones, and there truly aren’t many like him. He was respected for his professionalism, admired for his advocacy, and deeply appreciated for the way he connected with people. Patrick was the rare kind of professional who combined unwavering integrity with genuine kindness, and beyond his sharp wit and strong sense of honor, he was simply a good human, someone you could count on, learn from, and call a friend.

Patrick truly made a difference. His passion for the community and for helping patients created a lasting impact, one that will continue to be felt for years to come. He showed up for others in meaningful ways, and his presence made our community stronger. He will be remembered not only for what he did, but for how he made people feel.

Patrick’s quick wit, thoughtful questions, and wonderful sense of humor brought warmth and humanity to every room and every conversation. His compassion was genuine, his dedication unsurpassed, and his commitment to doing good never wavered. He was a kind soul, one of the good guys in every sense of the word.

While Wayne and I can’t be there physically, we are there in every other way, honoring his life, his goodness, and the difference he made for so many. What a remarkable legacy he leaves behind. Patrick was a shining light, and that light will continue to guide and inspire us.

Our thoughts and prayers are with his wife, daughter, and entire family during this incredibly difficult time.

May the road rise up to meet you.

May the wind be always at your back.

May the sun shine warm upon your face,

and the rains fall soft upon your fields.

And until we meet again,

may God hold you in the palm of His hand.

Godspeed, Patrick. You will be deeply missed, my friend.

Hemophilia Landscape Updates

• US Physicians' Satisfaction with Current Treatments and Joint Health
• Different Immune Responses in Hemophilia A and B Inhibitor Patients
• Osteopenia and Osteoporosis in Hemophilia
• Sarcopenia in Hemophilia
• Intracranial Hemorrhage in Hemophilia
• Hospitalization Outcomes in Hemophilia A and B
• New Estimate in De Novo Cases of Hemophilia
• Thrombophilia in Hemophilia Patients
• Methotrexate for Joint Protection?
• Joint Bleeding in Women with Hemophilia
• Factor IX Levels Do Increase During Pregnancy
• More on X-Chromosome Inactivation as a Cause of Bleeding in Women
• Bleeding Behavior in Carriers and Women with Hemophilia

UPCOMING IN PERSON EVENTS

Feb 19-22, 2026 – Orlando, FL

Men’s Empowerment in Action Retreat

The Hemophilia B Men’s Education & Empowerment Program is a unique three-day experience, during which men are given a safe space to share their journey with others and gain support.

Applications for first-time attendees are open through Monday, January 19. We have received a special grant to support participation, so we encourage you to apply as soon as possible! Click HERE to apply.

April 9-12, 2026 – Las Vegas, Nevada

Coalition for Hemophilia B Symposium

The Coalition’s Annual Symposium convenes medical, research, mental health, and policy experts alongside industry leaders and advocates to deliver education, support, and meaningful connection. The event builds community and empowers individuals to move forward with greater independence, confidence, and success in their careers and lives.

 April 8, 2026 – Las Vegas, Nevada

Let’s Play IX Golf Charity Event

The Let’s Play IX Golf Fundraiser raises funds to make it possible for children with hemophilia B to participate in a fun strength and skills-building activity that offers a healthy lifestyle option they can continue for a lifetime.

UPCOMING VIRTUAL EVENTS

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



• February 10
• March 10