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


 The Government Is Open, But the Fight for Affordable Healthcare Isn’t Over


Dear Friends,


As a national nonprofit organization dedicated to supporting individuals and families affected by chronic health conditions, we believe that access to affordable, quality healthcare is not a political issue, it’s a human one.


Now that the government has reopened, many people assume the crisis has passed. But the truth is, one of the most critical issues, the extension of the Affordable Care Act (ACA) premium tax credits, still hangs in the balance. Without these credits, millions of Americans could see their premiums double or lose coverage entirely.


This moment calls for unity and action, from all of us, Democrats, Republicans, and Independents may not agree on every policy, but we can all agree that no family should have to choose between paying for food, rent, or life-saving medicine.


The ACA isn’t perfect, but it provides a vital foundation for affordable coverage and protection for people with pre-existing and chronic conditions. Instead of tearing it down, we must protect and improve it so it continues to serve those who need it most.


Recently, eight senators, including Democrats and Independents, made the difficult decision to vote with Republicans to reopen the government. They did so to stop the suffering of families, restore critical programs like SNAP and food assistance, and ensure that negotiations to extend ACA tax credits could move forward. Their choice was one of compassion over politics, a reminder that progress sometimes begins with courage and compromise.


Now, it’s your turn to act.


Your voice can make a real difference in what happens next.


📞 Call, email, or write your legislators today and tell them:


Extend the ACA’s premium tax credits so coverage remains affordable.

Protect access to essential programs like SNAP and Medicaid.

Work together across party lines to strengthen our healthcare system, not weaken it.


Every message, every call, every voice counts. This is not the time to stand on the sidelines, it’s the time to speak up for what’s right. Please contact your representatives CLICK HERE


When the people lead, leaders follow. Together, we can make sure that compassion, fairness, and access to care remain at the heart of our nation’s values.


With gratitude and determination,

Kim 


Hemophilia Landscape Updates



Huge congratulations are in order for our very own Wayne Cook!! He has been recognized with the Sanofi TORCH award, celebrating individuals who are dedicated to raising awareness, educating, empowering, and connecting the rare disease community.



Since 2017, these awards have been presented by Sanofi US to highlight the contributions of patient advocates, caregivers, and changemakers in fostering hope, driving progress, and improving the lives of those affected by rare conditions, including a recent expansion to include the rare blood disorder community.


Here are a few excerpts from the nomination submitted about Wayne:

"Wayne is an extraordinary individual whose life embodies perseverance, compassion, and unwavering dedication to the Hemophilia B community. As the President of the Coalition for Hemophilia B, a national nonprofit that has served our community for 35 years. Wayne has been with us since the very beginning, helping to build this organization into the beacon of hope and support it is today."


"One of the most powerful testaments to Wayne’s impact is the inspiring documentary that chronicles his life story, a film that deserves widespread recognition for its raw honesty and profound message of survival and perseverance. Wayne’s courage in sharing his journey with the world has given a voice to so many who have felt unseen or unheard. His story resonates deeply within our community and beyond, offering strength to anyone facing adversity."


"But Wayne’s contributions extend far beyond his personal story. He has been a steadfast mentor to patients and caregivers of all ages, offering his wisdom and support through programs like the “Beats Music Program,” where he uplifts young people facing crises. Wayne is the person you call when you need a shoulder to lean on; he is a confidant, a compassionate listener, and a true leader whose heart beats for this community. His passion is genuine and unrelenting, everything he does is fueled by his desire to make life better for others."



Watch Wayne's TORCH video here: https://youtu.be/dCvGTc0_Eko


UPCOMING VIRTUAL EVENTS

Nov 13, 2025

Gene Therapy Rap Session

For men diagnosed with hemophilia B who are interested in, or are on gene therapy. Ages 18 and over.


Nov 18, 2025

Survive and Thrive, Mental Health Tools for Wellness, Support in Community


Nov 19, 2025

B-Leaders Teen Virtual Rap Session and Game Night


Nov 24, 2025

Gene Therapy Rap Session

For men diagnosed with hemophilia B who are interested in, or are on gene therapy. Ages 18 and over.


Dec 3, 2025

Hemophilia B Product Landscape

Understand your treatment options with Dr. David Clark!


Dec 9, 2025 
Gene Therapy Rap Session

For men diagnosed with hemophilia B who are interested in, or are on gene therapy. Ages 18 and over.


Dec 6, 2025
Register by November 25th to receive your gingerbread kit!
CLICK HERE

Gingerbread House Decorating + Trivia Night

Join us as our community gathers to decorate gingerbread houses and enjoy fun games together.

Gene Therapy Rap Sessions

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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



  • 11/13/2025
  • 11/24/2025
  • 12/9/2025

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.

 
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