The Coalition for Hemophilia B

The Coalition for Hemophilia B The Coalition for Hemophilia B, Inc.
880 Third Avenue, 5th Floor
New York, NY 10022
212-520-8272 The Coalition for Hemophilia B is a 30-year-old nonprofit.

Our mission is to make quality of life the focal point of treatment for people with hemophilia B and their families through education, empowerment, advocacy, and outreach.

Say It, Own It, Live It Find Your Voice — With the People Who Matter Most With food vouchers and raffles!You've been man...
07/28/2026

Say It, Own It, Live It Find Your Voice — With the People Who Matter Most

With food vouchers and raffles!

You've been managing hemophilia B your whole life. Now it's time to learn how to talk about it on your terms.

There are conversations you've been avoiding.

With your parents who still treat you like you're fragile. With your boss who doesn't know or kind of does, but not really. With your friends who say "that's so crazy" and change the subject. With a community of people who get it — and you've barely met them.

Communication is one of the most powerful skills you'll ever build. And for young adults managing hemophilia B, it's not just a soft skill—it's a survival skill.

This session isn't about being polished or perfect. It's about finding your voice, knowing when to use it, and learning how to say the things that actually need to be said.

✔ No scripts to memorize
✔ No cringe role-play
✔ Real talk, real tools, real life

Registration: https://www.hemob.org/upcoming-events/07-30-2026

Learn More About the Latest HEMGENIX® UpdateCSL Behring has shared a new update on HEMGENIX® (etranacogene dezaparvovec-...
07/27/2026

Learn More About the Latest HEMGENIX® Update

CSL Behring has shared a new update on HEMGENIX® (etranacogene dezaparvovec-drlb), highlighting progress in restoring supply, expanding patient access, and supporting treatment for people living with hemophilia B.

Read the full letter to learn more: https://www.hemob.org/resource-library/07-27-2026

Let's reset during a 60-min live-streamed series, in the B-Hub with Renk Koçtürk Weekly on Sundays at noon ET/ 9:00am PT...
07/23/2026

Let's reset during a 60-min live-streamed series, in the B-Hub with Renk Koçtürk Weekly on Sundays at noon ET/ 9:00am PT

Join us every week for our new 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.

Let’s make mental health a priority!

Sign up today: https://www.hemob.org/upcoming-events/07-26-2026

It's time to register for Fall Meetings on the Road! Meetings on the Road are educational, supportive, and free for all ...
07/23/2026

It's time to register for Fall Meetings on the Road! Meetings on the Road are educational, supportive, and free for all members who attend. Gas and toll expenses will be reimbursed, and meals will be provided.

🍁 September 12: Albuquerque, NM
🍁 September 26: Salt Lake City, UT
🍁 October 10: Portland, OR
🍁 November 7: Redondo Beach, CA

Connect with your hemophilia B community! These events will take place all over the country, so find the one closest to you and come along.

This is a family-friendly event, so bring your loved ones and create new memories with your community. Whether you're new or a veteran, this gathering is for you.

Each meeting takes place on a Saturday and features a full day of exciting activities and interactive learning sessions. You'll have the chance to learn from distinguished speakers and share your experiences with other attendees on living with hemophilia B. We also have fun games and special experiences planned to keep us entertained and engaged.

There are field trips for tweens and teens in every city, as well as a childcare playroom for babies, toddlers, and young children. If you are traveling over 2 hours to attend you are invited to apply for one hotel room the Friday night before to make your trip more comfortable.

Don't miss out on this incredible opportunity to build connections, make friends, learn new things, and have a blast. We can't wait to see you and your family in person!

Register today: https://www.hemob.org/meetings-on-the-road

Join us Thursday, August 6th at 8PM ET/5PM PT for The Caregiver Thread - A Virtual Space for Caregivers Across Generatio...
07/22/2026

Join us Thursday, August 6th at 8PM ET/5PM PT for The Caregiver Thread - A Virtual Space for Caregivers Across Generations.

Whether you’re a parent, partner, or family member, this is a place to connect, share, and feel supported by others who truly understand. We are stitched together by love, endurance, and compassion. Because what you do matters, and you’re not alone.

Each Caregiver Thread rap session will begin with a Conversation Guide who will help introduce the topic and share insights for approximately 30 minutes. The focus of the program is not a presentation, but a supportive conversation where caregivers can share experiences, ask questions, learn from one another, and build meaningful connections.

Session Topic: Compassion Fatigue- Caring deeply for a loved one can be both meaningful and exhausting. In this supportive session, Lucretia Jelks will explore the often-overlooked topic of compassion fatigue, the emotional, mental, and physical toll that can develop when caring for others through ongoing challenges. Participants will learn how to recognize the signs and symptoms of compassion fatigue, understand the difference between compassion fatigue and burnout, and discover practical strategies for self-care, emotional resilience, and recovery. Through reflection, validation, and real-world tools, caregivers will be encouraged to care for themselves with the same compassion they so freely give to others.

Community Co-Hosts: Leisa M & Melissa P

Lucretia is a motivational speaker, financial educator, mental health coach, and ordained minister who is passionate about helping others move from simply existing to truly living. With more than 30 years of public speaking experience, she has dedicated her career to empowering individuals and families through education, encouragement, and practical tools for personal growth.

Register today: https://www.hemob.org/upcoming-events

We are excited to invite you to apply to attend our 2026 Eternal Spirit Award Gala, taking place on Wednesday, October 1...
07/22/2026

We are excited to invite you to apply to attend our 2026 Eternal Spirit Award Gala, taking place on Wednesday, October 14, in New York City!

Airfare and hotel accommodations will be provided for up to three attendees per family. Please apply by September 1.

The travel grant will include:
✈️ Flight to and from New York City
🏢 Hotel
🚕 Transportation to and from the Hotel and the Venue

Apply today: https://www.hemob.org/upcoming-events/10-14-2026

🎓 Scholarship Deadline Extended — Apply by August 5!Good news! The application deadline for the William N. Drohan Schola...
07/21/2026

🎓 Scholarship Deadline Extended — Apply by August 5!
Good news! The application deadline for the William N. Drohan Scholarship has been extended to August 5.

If you are a graduating high school senior or a student continuing your education at a college, university, or trade school, we encourage you to apply.

The William N. Drohan Scholarship was established to support students as they pursue their educational goals and invest in their future. Whether you’re earning a degree or learning a skilled trade, we want to help you take the next step.

Don’t miss this opportunity.

📅 New Application Deadline: August 5
For eligibility requirements and application information: https://www.hemob.org/scholarships
Please help us spread the word by sharing this post with students throughout our community!

*The Nat Lathrop Music Scholarship and Let's Play Nine Scholarship are still due on July 15!

For men 18 and over with Hemophilia B, join us for our next Virtual Gene Therapy session Tuesday, August 4.If you’re con...
07/21/2026

For men 18 and over with Hemophilia B, join us for our next Virtual Gene Therapy session Tuesday, August 4.

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!

Register Today: https://www.hemob.org/upcoming-events/08-04-2026

Virtual Event: Hear from an expert physician on gene therapy for hemophilia B and listen to a firsthand account from som...
07/20/2026

Virtual Event: Hear from an expert physician on gene therapy for hemophilia B and listen to a firsthand account from someone who has received the treatment. This is your chance to learn and ask any questions you may have!

Speakers: Andrea Buxton, MSN, APNP, FNP-C (HCP Speaker) & Chip (Advocate Speaker)

Thursday, July 23, 8:00pm ET/5pm Pacific

Register Today: https://www.hemob.org/upcoming-events

Address

880 Third Avenue 5th Floor
New York, NY
10022

Telephone

+12125208272

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