Welcome to the 

Hemophilia B Monthly

Dear Member,

Oh my gosh, 35 years of serving the Hemophilia B community has been absolutely amazing! It’ such an honor to meet so many of you, to grow together, and to remain a family-oriented community.

We’re so excited to continue meeting you where you are and providing the support, programs and information you need to be successful in life, that’s always been our goal.

Here’s to 2025 and all the wonderful things we can accomplish together. Thank you for allowing us to be part of your journey!

With heartfelt gratitude,



Kim Phelan & The Coalition for Hemophilia B Team

Inside the Pfizer Advocacy Meeting

Key Takeaways for the Bleeding Disorders Community

Curious about the latest advocacy efforts shaping the bleeding disorders community? Our latest article recaps key discussions from the Pfizer Advocacy Meeting, where community leaders, patients, and industry experts came together to address pressing challenges and future initiatives.

Stay informed and see how these conversations impact access, treatment, and support for those living with hemophilia and other bleeding disorders.

👉 Read the full article now

New Insights on Factor Levels in Hemophilia B Carriers

Did you know that hemophilia B carriers can experience symptoms just like those with a formal diagnosis?

Dr. Clark explores the complexities of factor levels in carriers, shedding light on why some women experience bleeding symptoms and why proper diagnosis matters.

If you or a loved one is a carrier, this is a must-read to better understand your health and advocate for the care you deserve.

👉 Read the full article now

We Are The World

by the talented attendees of the 2024 Beats Music Program

We are delighted to present a beautiful musical rendition of We Are The World It is our hope that this heartfelt performance brings you joy and inspiration.

Our music program is more than just melodies—it’s a lifeline. It builds confidence, supports mental health, and offers a creative outlet for patients to express themselves and heal. The transformative power of music continues to change lives, one note at a time.

Thank you to our Beats Music Program Sponsors

 New Boundless B Episode Alert!

We Are the World: Celebrating Unity Through Music

 Listen now on Spotify, the website, or Apple Podcasts!

Join us for an informative presentation on gene therapy, covering the entire process from consultation to treatment.

This event is for everyone considering gene therapy, including their family that supports them. Hear firsthand from someone who has undergone this groundbreaking therapy for hemophilia B and get your questions answered!

🎤✨ Get Ready for a Night of Fun & Connection! 🎉🎶

Join us for an exciting Teen Virtual Rap Session & Game Night packed with energy, laughter, and community!

🔥 Agenda Highlights:

💬 Rap Session – Real talk with Matt & Landon

🧩 Hemophilia Trivia – Test your knowledge!

🌍 GeoGuesser Challenge – How well do you know the world?

🎟 Raffle Prizes & Goodbyes – Stick around for some surprises!



Don’t miss out—bring your energy and let’s make it a night to remember! 🎉💙

Join Us for a Two-Part Series!

📅 February 18 & March 18

🩺 SAFEGUARDING OUR HEALTH IN TIMES OF UNCERTAINTY

🎙️ Featuring Expert Speaker Dr. Bill Patsakos

Are you prepared for unexpected disruptions that could impact medical care? In today's world, we often rely heavily on infrastructure and technology, leaving us vulnerable in times of crisis.

Join us as Dr. Bill Patsakos explores real-life scenarios that may affect medical patients and provides practical preparedness strategies to help safeguard your health and well-being.

This engaging session will focus on:

✅ Raising awareness about potential challenges

✅ Staying vigilant and taking proactive steps

✅ Building resilience for an uncertain future

💬 Reflect, share, and prepare with us! Plus, enjoy raffles and food vouchers for participants.

📍 Don’t miss this opportunity to strengthen your readiness—secure your spot today!

To help us plan accordingly, please register at least five days before the event. This will allow us to arrange childcare, transportation for the kids’ trip, and meals to ensure a smooth experience for everyone.

Childcare will be available during all program hours, and for those interested, the optional kids' trip will depart right after breakfast and return before lunch. Each city offers an exciting excursion, such as visits to aquariums, museums, or adventure parks, making it a fun and enriching experience for the little ones.

Best of all, these meetings are completely free for members! To help with travel costs, we offer gas and toll reimbursements, and if you're driving more than two hours, you can apply for a hotel stay to make your trip more comfortable. Our goal is to ensure everyone has the opportunity to participate in these special events.



We can't wait to see you there!

Get ready for a magical experience in Orlando, Florida, as we celebrate 35 years of dedication to the Hemophilia B community. This milestone is for the incredible individuals like you who make it all possible!



Don’t miss out on this chance to connect, learn, and grow together. Register today and explore scholarship options to make this unforgettable experience accessible to all. Let’s honor our shared journey and look forward to a bright future together!

Travel grants are now closed, but we’d love for you to join us!

Welcome Logan to the Hemophilia B Family!

Parents Robin and Tony share: "We are so excited to welcome Logan to our wonderful family! Big brother Luke is so excited, and we’re looking forward to life as a family of 4!"