hemob.org



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



September B-Monthly

 Welcoming Fall

“Autumn…the year’s loveliest smile.” 
William Cullen Bryant

Dear Friends,

As we welcome this season of change, we are reminded that autumn looks different for each of us. For some, it may mean crisp air and falling leaves; for others, warm days that stretch on. No matter where we are, this time of year invites us to pause, reflect, and notice the simple joys that bring light into our lives. Even in the busyness of daily routines, finding just one thing that excites you can spark new energy and uncover hidden joys within.

Together, we walk a path that is stronger because of the passion and uniqueness each of us brings. May you be reminded of what brings you joy, of what lights you up, and may a glimmer of that shine through, lifting not only yourself but also those around you.

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)

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

Take Action to Keep Health Care Affordable

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

Right now, many patients are receiving a special tax credit that automatically lowers their monthly health insurance premium. You don’t see this money in your bank account, instead, it’s built directly into the reduced amount you pay each month.

If Congress does not act, these credits will expire at the end of this year. That means your monthly premium could jump by $700 or more, making coverage unaffordable for many families.

Legislation has been introduced to extend these tax credits through 2026. It isn’t permanent, but it will give patients more time to prepare and protect coverage in the short term.

Please use our Action Alert system today to ask your Member of Congress to cosponsor this important legislation. Your voice can make the difference in keeping health care affordable for thousands of patients living with rare and chronic diseases.

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



Send a message to your representative: CLICK HERE

It's time for the Coalition for Hemophilia B's Holiday Fund!



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 November 3.

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 donate on our website or mail checks 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.

Hemophilia Landscape Updates

• Spinal Stenosis May Be Part of Aging with Hemophilia 

Emergency Advocacy, System Change, and the Founding of Danny’s Dose with Darlene Shelton

UPCOMING VIRTUAL EVENTS

We have an incredible B-HUB Challenge coming up in the month of October! If you're not a member of the B-HUB yet, what are you waiting for?? We will be learning key words in advocacy, gene therapy, and other treatment options. There will be surprise raffles and winners each week!



Join today: connect.hemob.org to get in on the fun!

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.

Teen Corner