Milken Institute Patient Advocacy Forum

I am grateful to have been part of the Milken Institute Patient Advocacy Forum in Washington, D.C. A huge thank you to Jane Cavanaugh Smith and the Sanofi team for helping bring advocates from so many different disease communities together. There is so much we can learn from one another, and the speakers and conversations were fabulous. It was truly a wonderful experience.

Standing beneath the Tree of Generations at the Milken Center for Advancing the American Dream was such a powerful reminder of why we come together. Every face represents a person, a story, a journey and a dream. In patient advocacy, our disease states may be different, but there is so much we can learn from one another when we share our experiences and listen to each other.

-Kim Phelan

A Word From Dr. Clark

Hemophilia Care at HTCs Compared with 
Non-HTC Care

HTC patients traveled an average of 51.6 miles to their HTC, whereas non-HTC patients traveled only 7.3 miles to their clinic.

Read More →

Tattoos and Hemophilia

Some of the recommendations from the inked participants were:

1. get to know your tattoo artist
2. talk to your HTC, including for guidance
3. see if your tattoo artist will let you sit during the process.

Read More →

The General Election is 
Tuesday, November 3 2026

Medicaid Patient Guide

Changes to Medicaid could affect access to coverage, treatment, infusion services, and specialty care for some people with Hemophilia B.

The Coalition for Hemophilia B has prepared a patient guide explaining what may be changing, who may be affected, and what steps you can take now to help protect your coverage.

Key action steps include:

✅ Update your contact information with your state Medicaid office

✅ Open and respond to every Medicaid notice right away

✅ Begin gathering documentation of your Hemophilia B diagnosis and treatment needs

✅ Contact your HTC, hematologist, or care team if you may need an exemption

✅ Reach out for help if your coverage is disrupted

CHB is actively advocating for bleeding disorders to be recognized as serious or complex medical conditions that may qualify for exemption from work reporting requirements.

Read the Medicaid Guide ->

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.

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.



Burbank, CA: November 7

Apply for a Travel Grant for the 2027 Annual Symposium!

Travel Grants are funding provided by the Coalition for Hemophilia B to help cover the cost of travel and hotel so your family can attend the Symposium. This support is made possible by our generous event sponsors.

The Countdown Is On! 11 Weeks Left to Apply.

Unstoppable Ambition

Johnathon's Journey

Johnathon's story reflects a rare combination of intellect and determination in the face of significant challenges. Read this 16-year-old's story on page 63 of the newsletter.