Advocacy, Education, and Research and Development
The activities of the Coalition for Hemophilia B include but are not limited to:
- Acting as a primary source of information, nationally and internationally
- Meeting educational needs by offering symposiums, workshops, and discussions to provide information about:
- Insurance issues
- Treatment options
- Benefits of long-term prophylactic management
- Offering emotional and financial support to help individuals and their families cope with the condition
- Monitoring and supporting ongoing research
- Surveying and taking inventory of the needs and concerns of affected families
- Distributing Factor IX News, the Coalition’s educational newsletter responding to the need for information, advocacy, and scientific research exchange
- Hosting family-oriented meetings throughout the United States several times a year to unite, support, and share treatment options and methods
Factor IX Family Meetings
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) will guide teens (14-17 years old) through a powerful weekend of challenges, empowerment, education, and support.
The Generation IX Project is provided at no cost to participants.
This year’s Generation IX Retreat took place June 9-14 at YMCA Camp Collins in Oxbow Park, Oregon.
The Coalition holds several Factor IX Family Meetings over the year 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.
Annual Women's Retreat
Annual Men’s Retreat
The Coalition for Hemophilia B now also hosts an annual retreat for caregivers, mothers, wives, and women with bleeding disorders. 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, learn self-care, and bond with others in similar situations.
Each year, the Coalition for Hemophilia B sponsors a retreat for men living with hemophilia B. The retreat’s main mission is to help the men of the Factor IX community through peer support and education.
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.
Eshton Hewitt Quality of Life Memorial Fund
Dr. William N. Drohan Scholarship Fund
Eshton Hewitt was diagnosed with severe hemophilia B with inhibitors and anaphylaxis (a severe, sometimes fatal allergy) to Factor IX. He also had a connective tissue disorder called Ehlers-Danlos Syndrome.
During his lifetime, the Coalition for Hemophilia B, along with many of its friends and supporters, helped Eshton’s family install an indoor swimming pool so he could safely participate in the exercise he needed with no impact on his joints. One day in the pool, Eshton exclaimed, “When I’m in here it’s like I’m like any other kid!”
Unfortunately, Eshton passed away in 2011 at the age of 16.
In his honor, we have continued the Eshton Hewitt Quality of Life Memorial 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 funds, especially those who have lost a parent.
Factor IX Holiday Program
The Factor IX Holiday Program helps families in need by providing holiday gifts, food, clothes, boots, and more.