Welcome to the 

Hemophilia B Monthly

Spring is a time of renewal, growth, and fresh energy—and we’re feeling it all here at The Coalition for Hemophilia B! As we welcome the new season, we’re also celebrating a major milestone: our 35th anniversary. We’re especially excited to gather for our 19th Annual Symposium as we honor this meaningful journey and look ahead to a powerful year of connection, education, and impact.

Warm wishes,

Kim Phelan 

March is Bleeding Disorders Awareness Month — a time to shine a light on the strength, resilience, and unity of our community. At the Coalition for Hemophilia B, we're proud to stand with individuals and families affected by bleeding disorders, working every day to ensure they have access to the support, education, and care they deserve.

The following statistics help show just how rare—and strong—our Hemophilia B community truly is:

🔹 1 in 20,000 males is born with Hemophilia B. 💙 

🔹 Hemophilia B makes up 20-25% of all hemophilia cases. 🩸 

🔹 Only 7,000–8,000 people in the U.S. have Hemophilia B. 🇺🇸 

🔹 About 30% of Hemophilia B cases are severe. 🚨 

🔹 About 50% of women who carry Hemophilia B gene experience signficant bleeding, too! 👩🏻‍⚕️

🔹 Almost 1 in 5 patients with mild hemophilia is female. 👩🏻‍⚕️

🍎 Join Our National Nutrition Month Challenge! 🥦

Fuel your body and mind with balanced, nourishing meals during our fun week-long challenge! 💪🧠

✨ Why it matters:

A well-balanced plate 🥗 supports steady energy ⚡, healthy digestion 🏃‍♀️, and overall wellness.

📅 Kickoff Event:

Join Holistic Nutritionist Vanessa Harris on Monday, March 24th 🎉 as we dive into:

✅ Why balanced nutrition matters

✅ How to participate in the challenge

✅ How to enter our raffle prize giveaway 🎁

🍽️ Need meal ideas?

We’ll be sharing easy recipes 🥑🍳 and pro tips to help you build better meals effortlessly!

📆 Challenge starts March 24th!

Ready to eat smarter and feel amazing? Let’s do this! 🚀

Teenage Connor lives with hemophilia B and an inhibitor—but that doesn’t stop him from inspiring us every day with his strength and resilience.

When asked how he would encourage someone who had just been diagnosed, Connor had this to say: “Even going through all that I do for treatment, I still strength through. I want to be a story to tell and a role model for all the young-uns. I want to tell them not to let it stop them. You just gotta keep your head up. Your diagnosis might sidetrack you, but don’t let it overcome you. There’s been a lot of new medicine in the last few years. It’s going to get better. Don’t let it control you.

Be who you are and are going to be - be the astronaut, be the firefighter, be the cop.”

Spotlight on Ashley Zebley

For Ashley Zebley getting treatment has been a battle

What advice do you have for others?

Find a doctor who’s willing to dig deep. Don’t be afraid to switch providers. I’m a deep empath, and I was worried about insulting my previous doctors, thinking they knew better than me. But we know our bodies best, and it’s vital to have someone who listens and takes your concerns seriously.

Most importantly, don’t give up.

I won’t lie. I had some dark thoughts. I was ready to quit, but then I reached out to Kim Phelan from the Coalition for Hemophilia B, and others. They didn’t let me give up. Let others support you and help you find a way through.

🙌👏👏

Retreats

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

Click here to visit our website for more information and to apply to attend!

The Beats

🎶 Calling all musicians ages 13+ for an incredible experience with the Beats in Nashville, TN, this summer! All skill levels are welcome to apply! *Ages 13-14 need to be accompanied by at least one parent.



Click here to visit our website for more information and to apply to attend!

Women - Add Your Voice to the Probe Study!

Your participation in the Probe Study will help amplify female voices and provide insights to benefit our hemophilia B community. Preliminary results will be shared in April at our Annual Symposium in Orlando!

Let’s take action for women and girls affected by bleeding disorders. Too many remain overlooked, misdiagnosed, or without proper care. It’s time to change that by amplifying their voices, gathering essential data, and pushing for real solutions.

Together, we can make a difference. Join the movement!

Story Vault: Stories You May Have Missed

🧬 Are you or someone you love a hemophilia carrier?

Understanding your carrier status is essential — and thanks to advances in genetic testing, it's easier than ever to get the information you need.

In this article, Dr. Clark explains the importance of hemophilia carrier screening, what the process involves, and why early knowledge empowers better care and informed decisions. 👩‍⚕️💡

UPCOMING ONLINE EVENTS

April 29th, 8PM EST With Phat Nguyen

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.

Understanding Your Options

The world of hemophilia B treatment is evolving rapidly, offering more choices than ever before—but with greater options comes greater complexity. In this informative session, Dr. David Clark will break down the latest advancements, key scientific principles, and essential terminology to help you navigate the treatment landscape with confidence.

COMMUNITY GATHERINGS 

Can’t wait to see you in Orlando!

COMMUNITY SPOTLIGHT 

We're thrilled to share that community member and 6th-grade math teacher Rebecca VanSant has been honored with the Presidential Award for Excellence in Mathematics and Science Teaching by the National Science Foundation.

This prestigious award is the highest national recognition for K–12 educators in STEM (science, technology, engineering, and mathematics).

Please join us in congratulating Rebecca on this incredible achievement!

Click here to read more