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

☀️ Hello Summer!

School’s out, sunscreen’s on, and we’re officially entering the season of lazy afternoons, fishing poles, lightning bugs, and chasing ice cream trucks like grown-up pros. 😎

A big congratulations to all the graduates—you did it! And to everyone else: may your summer be filled with laughter, music, and whatever makes your heart smile (even if it’s just staying cool in the shade with good friends, a popsicle and a good book). 

As you soak up the sunshine and enjoy those long-awaited family moments, we ask you to squeeze in one tiny but powerful action: send a quick email or make a short call to your senators. Our Action Center will make this easy. Click here. Yes, even in flip-flops. Between the grilled corn and giggles, your voice still matters, and it’s how we keep making progress together.

Here’s to joy, connection, and making every sunny moment count.

With gratitude and sunshine,

Kim 

Thank you to the many members who joined our Advocacy in Action event on June 19th. 

Currently Congress is working to pass HR. 1, the One Big, Beautiful Bill Act (OBBBA). This bill will have signification implications on public and private health coverage such as Medicaid, Medicare and the Marketplace. Congress is cutting programs to pay for a tax cut. 

With Medicaid, Congress is utilizing administrative processes such as a second certification period, work requirements and additional copayments to ween patients off the program. With the Marketplaces, Congress is restricting the open enrollment time, ending automatic renewal, and not renewing the extended premium tax credits. This bill places greater burdens on bleeding disorder families. 

The Coalition for Hemophilia B asks that you please join us through our legislative contact system and send a letter to your Senators to vote against this bill.

Press Release

The Coalition for Hemophilia B Welcomes Lee Hall as Vice President of Strategic Advocacy & Partnerships

New York, NY — The Coalition for Hemophilia B is proud to announce that Lee Hall has joined our team as Vice President of Strategic Advocacy & Partnerships.

Lee Hall has been an active leader and respected voice in the bleeding disorders community for decades. His extensive knowledge, unwavering passion, and deep commitment to improving the lives of individuals with hemophilia and other rare conditions make him a tremendous addition to the Coalition.

Spring 2025 Hemophilia B Landscape Updates



• Iron Deficiency in Women with Bleeding Disorders
• Bone Health in Hemophilia Patients
• Real-World Unmet Needs of Hemophilia Patients 
• Less Bleeding in Hemophilia B Patients on EHL Prophylaxis 
• Non-Inhibitor Antibodies May Affect Hemophilia Severity 
• Infants with Hemophilia Lag in Gross Motor Development 
• Spinal Stenosis May Be Part of Aging with Hemophilia 
• Lick Your Wounds! 

Don’t Miss Our Upcoming Virtual Events!

Mental Health Mondays in the B-Hub

 Strength in Connection: For those 50 and over: June 23

 B-Leaders Teen Virtual Event: June 24

 Gene Therapy Rap Session: July 2

Strength in Connection: For those 50 and over: July 8

 Learn About HYMPAVZI™: July 9

Gene Therapy Rap Session: July 15

 Hemophilia B Product Landscape with Dr. David Clark: July 24

And so much more! Check out hemob.org/events to learn more and register!

🎙️ Everyone Has a Story—What’s Yours?

From welcoming a new baby to becoming an empty nester… from starting a first job to embracing retirement, every stage of life holds wisdom, and your story matters.

Whether it’s career advice, life lessons, or personal experiences navigating healthcare, school, or relationships, we want to hear from you.

Join our podcast series hosted by award-winning Kai, a kind, thoughtful interviewer who makes the process easy and enjoyable. He’ll share the questions ahead of time, so you’ll feel totally prepared.

💬 Ready to share your story and inspire others?

Click the link below. We can’t wait to spotlight your voice.

If you want to work with Kai—he’s your guy! 🎧

Factor Nine Holiday Fund

Why We’re Starting Our Holiday Toy Fund Early: It may seem early to talk about the holidays, but we’re starting now because toy prices are expected to rise, and supplies may be limited later in the year due to tariffs and other disruptions. To ensure we can bring holiday joy to children in need, we must plan ahead.



This program is specifically for families experiencing financial crisis. Our budget is limited, and we want to make sure we reach those who need it most. If your family is in need of support this holiday season, please apply by June 30.

If you would like to help make the holidays brighter for a child in need, donations are always welcome. Every contribution, no matter the size, makes a difference.

Please send donations to:

Coalition for Hemophilia B

Attn: Special Elf Kim

880 3rd Avenue, 5th Floor

New York, NY 10022

Thank you for your kindness and generosity. Together, we can help bring comfort, joy, and a little holiday magic to families who need it most.

UPCOMING IN PERSON EVENTS

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

 Meetings on the Road: A Powerful Journey Continues! 

Our Meetings on the Road series has been engaging, interactive, educational, and fun! From laughter to learning, each event brings our community together in powerful and meaningful ways.

But the mystery still continues…

Every Meeting on the Road begins with a clue—and you won’t solve the full puzzle until the very end. Work with your team, stay sharp, and good luck solving it!

Read the latest recap from our most recent stops across the USA, click here.

Register now for an upcoming event, dates and locations click here. 

Let’s keep the momentum going, we can’t wait to see you there!

Community Corner

Congratulations to Kasie Lynn and Bobby Paul

Congratulations to our 2025 Graduates!

About the Coalition for Hemophilia B

For over 35 years, the Coalition for Hemophilia B has focused on improving the quality of life for those with hemophilia B and their families through education, empowerment, advocacy, and extensive outreach. 

With a family-oriented approach, our national nonprofit connects patients across the USA, fostering a supportive community that enables individuals to make informed decisions, forge lasting friendships, and advocate effectively for themselves in a diverse and inclusive environment.