Welcome to the Hemophilia B-Monthly

Dear Community,

You are the heart, the soul, and the spirit of our community, lifting others with your kindness, your passion, and your unstoppable dedication. Every life we touch is with your help and we are endlessly grateful for all that you do!

Our Annual Symposium was such a beautiful and inspiring success. Together, as volunteers, team members, and supporters, you showed what true community looks like: full of compassion, connection, and light.

And now, an exciting season awaits

This spring and summer, we’re taking that energy on the road with in-person women’s retreats, men’s retreats, music programs, and our all-new Meetings on the Road series, featuring interactive mystery scenarios, laughter, learning, and connection. We’re excited to offer these incredible programs, there’s truly something for everyone and we can’t wait to see you! 

Thank you for being part of our family, for believing in our mission, and for inspiring us every day. 

Wishing you a joyful, light-filled, and beautiful spring ahead!

With appreciation,

Kim Phelan

2025 Symposium - Orlando, Florida

World Hemophilia Day - April 17

Raising awareness and advocating for women with bleeding disorders is vital, and together, we will continue to raise our voices and push for stronger recognition and support. We were delighted to join other organizations and advocacy patients on the Hill on April 17. Please visit our website HemoB.org/advocacy for the article.

In case you missed it, we were proud to launch a special campaign for World Hemophilia Day on April 17!

Our social media outreach featured powerful messages, including several videos please see this one featuring Ashley Zebley, highlighting a critical truth: women bleed too.

Boundless B Podcast

Spotlight on our

2024 Volunteer of the Year

Award Winners

Beginning May 7, 2025, the Transportation Security Administration (TSA) will enforce the REAL ID requirement.Travelers without a REAL ID or an acceptable alternative may face delays, additional screening, or be denied access to secure areas at airports.

Children under 18 are not required to present identification when traveling with a companion within the United States.

📌 Quick Checklist

✅ Check your license for the gold star.

📅 Schedule an appointment at your local DMV or tax collector office.

📄 Gather necessary documents: proof of identity, Social Security number, and two proofs of address.

🛂 Consider using a passport or other accepted ID if you cannot obtain a REAL ID before the deadline.

For more information and to ensure you're prepared, visit the DHS REAL ID website.

Upcoming In Person Events

Men's Retreat - Oklahoma

For men, age 18 and over with hemophilia B, spouses, and dads

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

Deadline to apply: April 28, 2025

Meetings on the Road continues!

Join the fun with a mystery series at our interactive Meetings on the Road! The clues are coming, but the mystery won’t be solved until the very end. Don’t miss out—register now!

We’ve been overjoyed to connect with so many of our families as we travel locally, and we can’t wait to see even more of you. Join us for interactive education, outdoor fun, meaningful conversations, and exciting day trips for tweens and teens!

We can't wait to see you and your family in person!

St Louis, MO: May 3rd

San Antonio, TX: May 17th

Women's Retreat

For women aged 18 and over with hemophilia B, carriers, those diagnosed or seeking diagnosis, spouses, and caregivers

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

Deadline to apply: May 15, 2025

The BEATS Music Program

For ages 13 to 101. 

(Participants ages 13 to 17 must be accompanied by an adult.)

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

Let’s make music together!

Whether you’re a beginner or advanced, there’s something for everyone in this dynamic experience. Come explore rhythm, creativity, and connection through music.

Deadline to apply: June 4, 2025

Men's Retreat - Georgia

For men, age 18 and over with hemophilia B, spouses, and dads

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

Deadline to apply: August 7, 2025

Upcoming Virtual Events

Gene Therapy Rap Sessions

For men with hemophilia B over 18.

Upcoming dates:

• 4/29/2025 - with Phat Nguyen
• 5/13/2025 - with Bobby Wiseman
• 5/29/2025 - with Bobby Wiseman
• 6/10/2025 - with Bobby Wiseman

B-Leaders Teen Virtual Event

🎤✨ 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 & Isabelle

🔍💭 Think you know people? Time to put your instincts to the test with Guesspionage – the ultimate percentage-guessing game from Jackbox Games!

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

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

Understanding the Phases of Childhood, One Milestone at a Time

Expert Speakers: Tiffani P, CHB HOST & Speaker and Meaghan Carty, CSL Behring

Parenting a child with hemophilia B comes with unique challenges—but you don’t have to navigate them alone. Join us for an engaging and supportive discussion, co-hosted by two experienced parents and an expert speaker, where you’ll find a safe space to ask questions, share concerns, and connect with others who understand.

Together, we’ll explore topics like managing the emotional impact of a diagnosis, effective communication with providers and educators, strategies to ease anxiety, and ways to build a lasting support system. Whether you're new to the journey or preparing for the next stage, this session will leave you informed, empowered, and supported.

Come as you are—because no parent should have to figure it all out alone.

Navigating the Hemophilia B Product Landscape with Dr. Clark

Don’t miss Dr. Dave Clark’s virtual session on the current hemophilia landscape, insightful, informative, and essential.

CLICK HERE to register

Scholarships

Scholarships are now open on our website, don’t wait to apply! CLICK HERE to apply

Story Vault

Stories You May Have Missed

🩸 Struggling with joint pain? You’re not alone.

For people with hemophilia and other bleeding disorders, joint pain can have a major impact on daily life. Early care, regular checkups, and knowing the signs of joint damage are key to protecting your mobility and quality of life.

Learn more about managing joint health and why it matters: CLICK HERE

Community Spotlight

Congratulations to our 2025 Volunteers of the Year!

At our 2025 Symposium, we proudly honored Chad, Laura, and Leslie as our 2025 Volunteers of the Year. Thank you for your incredible commitment and for inspiring the strength of our community!

From left to right: Rocky Williams, Erica Garber, Chad Stevens, Farrah Muratovic

From left to right: Rocky Williams, Laura Echandi, Erica Garber, Chad Stevens, Farrah Muratovic

From left to right: Rocky Williams, Leslie Starks, Erica Garber, Chad Stevens, Farrah Muratovic