hemob.org



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

Dear Friends,

We hope you’ve all enjoyed a joyful and restful summer! As the kiddos gear up for the new school year, we want to wish students, parents, and educators a happy, healthy, and productive start to the season ahead.

With the first signs of autumn just around the corner, we’re getting ready to roll out some exciting new programs and opportunities, including plans to visit cities near you. We’re looking forward to connecting with many of you in person and continuing to bring support, updates, and inspiration your way.

As we shift from vacation mode into a season of learning, growth, and change, we wish you all a smooth and positive transition. And of course, I want to wish you all a very happy Labor Day weekend, may it be relaxing, safe, and well spent with those you love!

Here’s to a wonderful fall filled with new beginnings, meaningful connections, and fresh energy!

Warmly,

Kim Phelan

CEO

WAYS TO ATTEND

There are four ways to attend the Symposium:

• Airfare Travel Grant
• Driving Travel Grant
• 2026 Golden Ticket Winner (awarded at 2025 Meetings on the Road)
• Non-Grant Attendee (covering own costs)

Travel grant deadline to apply: September 2, 2025

We are excited to invite you to apply to attend our 2025 Eternal Spirit Award Gala, taking place on Thursday, October 9, at Terrace on the Park in Queens, NY.

We are proud to honor Dr. Guy Young and Dr. Jill Johnson for their exceptional dedication and impact on the Hemophilia B community.

Airfare and hotel accommodations will be provided for up to three attendees per family.

The travel grant will include:

• Flight to and from New York City
• Hotel
• Transportation to and from the Hotel and the Venue

If you or a loved one has been a patient of, or worked closely with, either of these remarkable physicians, we would love to hear from you. Even if you do not apply to attend, we warmly welcome your testimonial, written or recorded, to be shared as part of our tribute. Your voice can help celebrate these well-deserving honorees.

CLICK HERE to submit a testimonial. Be sure to include how you know Dr. Young or Dr. Johnson and your name.

• Symposium 2025
• Meet Becky VanSant
• No Bull: Wisdom from Hemo Farmer Chris Templin

James Romano (left) and Lee Hall (right) working together to protect access to care and raise the voices of those with hemophilia B.

Major Health Policy Changes Ahead

What the 2025 Budget Reconciliation Act Means for People with Hemophilia B

The 2025 Budget Reconciliation Act, signed into law on July 4, brings sweeping changes to Medicaid, Medicare, and Marketplace health coverage—changes that will directly impact people with hemophilia B and other rare conditions.

CHB Advocacy team member Lee Hall shares why these changes are being called the largest loss of healthcare coverage in American history and how our community can take action.

📅 Many provisions take effect as soon as August 2025.

📣 Your voice matters—speak up, share your story, and stay informed.



Read the full article: CLICK HERE

Hemophilia Landscape Updates

• 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 
• Bone Health in Hemophilia Patients
• Iron Deficiency in Women with Bleeding Disorders
• Lick Your Wounds! 

We are proud to have awarded 12 kiddos in need school supplies thanks to a generous community donor and our BCares fund: 

Jaxon, Benjamin, Addy, Jayden, Elian, Santiago, Mateo, Dominic, Owen, Ben, Evelyn, Oliver 

Our anonymous donor said they received a lot of help growing up and now that they can give back, they want to make a difference for other children in need. It’s so beautiful to see giving come full circle. We have such an amazing community! Wishing all of the students a wonderful 2025-2026 school year!! 

REPORT

How Our Health Systems Are Failing Women and Girls With a Bleeding Disorder

We applaud the UK Haemophilia Society and the World Federation of Hemophilia Women and Girls Committee for this outstanding and informative report.

CLICK HERE to read the report

UPCOMING VIRTUAL EVENTS

Mental Health Mondays in the B-Hub

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



• 09/30/2025
• 10/16/2025
• 10/27/2025

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.

Community Corner

From left to right: Rocky Williams, April Willis, Dr. David Clark and Erica Garber

The Coalition for Hemophilia B team at the NBDF Conference in August - thank you to all who stopped by our booth!