Hemophilia B Monthly


Empowering Through Education and Community

 

From the CEO

September has a lot going on!


It is National Preparedness Month, National Recovery Month, Suicide Prevention Month, Pain Awareness Month and Healthy Aging Month and so much more. 


That may seem like a lot to fit into one month, but there is a reason these important reminders are put on our calendars. They give us a chance to stop, pay attention and remember that taking care of ourselves has many different pieces.


Are we prepared for an emergency, especially when medications and treatment supplies are essential?


Are we taking care of our mental and emotional health and checking in on the people around us?


Are we paying attention to pain instead of simply accepting it as something we have to live with?


Are we supporting people in recovery with understanding, compassion and without judgment?


And as we get older, are we taking care of our bodies and our overall health so we can stay as healthy, active and independent as possible?


For people living with Hemophilia and the families and caregivers who support them, these are especially important conversations. Living well means looking beyond the bleeding disorder and taking care of the whole person.


September may have a lot of awareness reminders, but they all bring us back to something very simple:

Take care of yourself. Be prepared. Pay attention to your physical and emotional health. Check in with the people you love. Ask for help when you need it.


And remember, we don’t need to wait for an awareness month to take care of the Whole You.


Kim Phelan

CEO 

 

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.


Portland, OR: October 10

Redondo Beach, CA: November 7

 
 
ChatGPT_Image_Aug_27_2026_03_21_30_PM.png_p1.png

Weekly Reset with Renk


🗓️ October 1, 8, 15, 22 and 29


🕒 7PM ET


A 60-min live-streamed series, in the B-Hub with Renk Koçtürk


Join HERE

Understanding Your Options with Dr. Dave


🗓️ October 1


🕒 8PM ET


An informative session on hemophilia B advances.

VIEW EVENT ->

Making Informed Choices in Hemophilia B With IDELVION


🗓️ October 6


🕒 8PM ET


Speaker: Courtney Carr, RN-BC, MSN, CPNP


VIEW EVENT ->

Voices of Her Bloodline


🗓️ October 9


🕒 8PM ET


Speaker: Kendall Dean, RN


VIEW EVENT ->

Gene Therapy Support Network


🗓️ October 13


🕒 8PM ET


For men with hemophilia B over 18.


VIEW EVENT ->

Foto Latino de Hemofilia B


🗓️ October 19


🕒 8PM ET


For men with hemophilia B over 18.


VIEW EVENT ->

Understanding a Rebalancing Therapy Option for Hemophilia


🗓️ October 20


🕒 8PM ET


For men with hemophilia B over 18.


VIEW EVENT ->

 

Living Unburdened: Travis Roop’s Hemophilia B Journey

 

Travis embraces life with curiosity, adventure, and a genuine appreciation for others. Whether he’s cooking, drumming, playing disc golf or virtual mini golf, exploring virtual reality gaming, home brewing, or listening to audiobooks, he’s always finding new ways to learn, connect, and enjoy life. Travis will also share his personal journey with gene therapy and the experiences that have shaped his outlook along the way.

 
 
 

Word of the Month 
Protein Turnover

 

Protein turnover is the continuous, simultaneous process of making new proteins and breaking down old or damaged ones to maintain cellular, tissue, and metabolic balance. “Simultaneous,” indicates that proteins are being made and destroyed at the same time. This helps to ensure that the proteins in the body are always fairly new and in good shape. Protein turnover affects 300 to 400 g of protein daily in adults. Protein turnover consists of two processes: synthesis (anabolism), which creates new proteins from amino acids, and degradation (catabolism), which destroys old, misfolded, or damaged proteins by breaking them down into amino acids for recycling or disposal.

 
 

Community Highlight

Another Incredible Fall Women’s Retreat Comes to a Close 🍂


Some experiences stay with you long after you go home. Our Women’s Retreat is one of them.


We just wrapped up our 2026 Fall Women’s Retreat, and my heart is full. There is something powerful about women coming together in a safe space to laugh, learn, cry, share, and realize, “I’m not alone.”


Vulnerability becomes connection. Connection becomes strength. And women leave feeling more supported, educated, empowered, and connected to a community that stands beside them.


We are also deeply grateful to our wonderful educators for sharing knowledge and practical tools our women can take home, and to our sponsors, Pfizer and Sanofi, for helping make this meaningful experience possible.


To every woman who trusted us with her story, laughter, tears, and heart: thank you. You are what makes these retreats so extraordinary.


We come together as women. We leave as a community. 💙

More than a decade of women lifting women.


—Kim Phelan 💙

 

Home

News

About

Events

Contact

 
Facebook      Instagram      Web
 

The Coalition for Hemophilia B | 880 Third Avenue, 5th Floor | New York, NY 10022 US