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

Dear Members, 

As we close out May, we want to gently remind you that the next 33 days are critical. Important changes to a major bill are underway, and your voice is needed now more than ever.

We know you’ve likely received messages from many organizations, but please don’t underestimate the power of your voice. Every email, call, and conversation matters. Together, we’ve always been a strong and vibrant community, and I believe in each and every one of you.

There are smarter ways to manage the budget than cutting the lifelines from Americans, as so many depend on. The more we understand, the better we can advocate, for ourselves, and for each other.

Please also join us virtually on June 19 at 8 PM for a special event on Public Policy and Advocacy. Registration will be available soon, and I truly look forward to seeing you there.

With deep gratitude,

Kim

• Reflections from the 2024 Women’s Fall Retreat
• Meetings on the Road
• Lady J and the Magic of the Blues

A Fascinating Link: Ehlers-Danlos, Factor IX & Vitamin C

Don’t miss this insightful piece by Dr. David Clark, exploring a possible connection between Ehlers-Danlos Syndrome and Hemophilia B, a pattern first observed by Kim Phelan and now backed by emerging research.

Could collagen, Factor IX, and even Vitamin C be connected in ways we’re only beginning to understand?

 Read more in our latest issue—this is a must-read for anyone living with or caring for someone with Hemophilia B and EDS. CLICK HERE

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 VIRTUAL EVENTS

Survive & Thrive

Living with hemophilia B can be overwhelming—physically, emotionally, and mentally. You are not alone.

Survive & Thrive is a virtual series designed to support your whole well-being. Led by caring professionals who understand the unique challenges of life with hemophilia B, these sessions offer real tools for managing stress, navigating pain, and building habits that support your mental health.

Together, we’ll explore ways to care for ourselves—body and mind—while challenging the stigma that often surrounds mental health. Each session is a chance to pause, connect, and focus on what helps you feel stronger, calmer, and more understood.



You deserve support. Let’s thrive—together.

Understanding Treatment 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.

Mental Health Mondays in the B-Hub

Join us every week for our ongoing series, featuring practical tools and calming moments designed to help you take care of your mind, body, and soul.

Whether you’re looking for motivation, stress relief, or simply a safe space to breathe and reset, our weekly sessions will help you begin your week on the right note, with compassion, clarity, and community. Join live or watch on replay exclusively in the B Education Hub, and connect with others who truly understand.



Join us every Monday from 1 to 2 PM Eastern

CLICK HERE TO JOIN the B-Hub

Need a moment of calm? 🐝✨ Watch the Bumble Bee Breath video and breathe along!

WATCH THE BUMBLE BEE BREATH VIDEO

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

• 6/10/2025
• 7/2/2025
• 7/15/2025
• 8/5/2025
• 8/26/2025

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!

Love and new beginnings! We’re kicking off our Community Photo Corner with a joyful wedding celebration—followed by a heartfelt congratulations to the incredible Class of 2025. Whether you’re walking down the aisle or across the stage, your community is cheering you on!"

The Coalition for Hemophilia B has a new family member! Caitlin was Married to William Jr on 05/02/2025. Congratulations to all!

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.