Factor IX Family “On the Road” Meetings

The Coalition holds several Factor IX Family Meetings throughout the year, and throughout the United States.

The meetings are educational and supportive and especially helpful to families with no prior history of hemophilia B (about 30% of those diagnosed).

We create an “extended family” for our members, encouraging them to share contact information with one another to provide support for the challenges that come with being diagnosed with or having a child with hemophilia B.

Visit our Events page for a list of upcoming meetings!
Follow our Events calendar on Facebook.
 

B Connected Peer-Families-Experts Group

As new therapies flood the market, it is more important than ever that the hemophilia B community has a way to share, discuss, and stay connected. Because of the daily attention their disorder requires and, at times, limited mobility, it can be challenging for those impacted by hemophilia B to engage with their peers, in person. Hemophilia B Connected is an online discussion board (hosted on Slack) that serves as a bridge to the larger community. The digital app helps to ensure that we are addressing all avenues of communication so that critical information is not missed and false rumors are addressed immediately and corrected.

A key feature of Hemophilia B Connected is the "Ask the Experts” Channel where experts from the hemophilia B community digitally “host” discussion sessions and participants can ask the host their specific questions. This forum will feature a wide range of peer support and expert speakers educating on Advocacy, Psychosocial issues (depression, pain management, unaffected siblings), Physical Therapy, Nutrition & Exercise, Woman with Bleeding Disorders, Inhibitors, New Family Support, Aging with Hemophilia, and much more!

Read more about B Connected and how to join this online community

 

Dr. William N. Drohan Scholarship Fund

Bill Drohan, a well-known microbiologist and educator, lost his battle with metastatic lung cancer at the age of 60. He was a pioneer in using molecular biology to produce recombinant proteins and a visionary scientist who dedicated his life to improving the safety of blood and blood products. He also served as a member of the board of the Coalition for Hemophilia B and was instrumental in its creation.

The scholarship fund is for children of scientists working in the hemophilia area who have a need for financial aid, especially those who have lost a parent.

 

Generation IX (Teen, Mentor, and Leadership Programs)

If you are a young person living with hemophilia B, the Generation IX Project was designed for you. There are others like you—teens and young adults who will band together to learn how to do more, learn more, experience more, and be more than they thought possible.

In this mentorship program, young adults (18-29 years old) guide teens (14-17 years old) through a powerful weekend of challenges, empowerment, education, and support. The program is a training ground for future leaders in our hemophilia B community.

The Generation IX Project is provided at no cost to participants.

Watch a video of the Generation IX Project in action (held in Oxbow Park, Oregon)

Annual Men and Women's Retreats

Men's Retreat

Each year, the Coalition for Hemophilia B sponsors a retreat for men age 21 and older living with hemophilia B, and we now include fathers of children with hemo B. The retreat’s main mission is to help the men of the Factor IX community through peer support and education.

Our Factor Nine Men's Retreats are an outstanding success. The participants, who often call each other “blood brothers,” enjoy the retreat as a time to gather and share with other people who have encountered similar challenges.

Watch a video from one of our Men's Retreats

Women's Retreat

The Coalition for Hemophilia B also hosts an annual retreat for caregivers, mothers, wives, and women with bleeding disorders to create a supportive environment where they will learn new methods of coping with the challenges of living with hemophilia B. The first annual retreat was held in April 2015 and generously sponsored by Pfizer.

Our goal is to enable and empower women in the hemophilia community to find their voices and bond with others in similar situations. Our program puts an emphasis on Wellness by tackling topics such as depression, communication, self care, health & financial concerns, and many other issues that they face. 

Watch a video from one of our Women's Retreat

BCares Patient Assistance Program

BCares is the Coalition for Hemophilia B’s emergency assistance fund, designed to provide urgent help to individuals or families affected by hemophilia B when they are faced with specific critical needs. These crisis situations may include housing, transportation, and utility bills.  BCares cannot cover any medical expenses including medical bills, dental bills, insurance premiums, co-payments, deductibles, and medications including clotting factor.

Learn more about the eligibility requirements and link to the online application