Advocacy, Education, and Outreach

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

Our Programs

Yearly educational symposium, family meetings in cities across the country, retreats for men and women, academic scholarships, and patient assistance funding. Read about each of our featured programs.