Pilot Program for Boys with Hemophilia or vWD will Launch in Late 2024
The ability to manage your own care, independent of the help of a parent or caregiver is an important step in becoming a young adult. To help young males discover their current level of independence in their care, and help them gain the confidence to take it on themselves, Hemophilia Federation of America has developed a pilot program.
Together with a parent or caregiver, the young adolescent males, ages 10 to 14 years old, progress through a fun and interactive online activity. The online activities feature game-like characters, designed by a comics artist, and real-life blood brothers talking about how they got started on their journey to becoming an independent man. While the young males progress through the activity, parents and caregivers will progress through a corresponding educational course to learn how they can be an observant and supportive caregiver.
To express your interest in participating in the Supporting Health and Independence in Children pilot program, complete the following form:
Criteria for participating:
One male between the ages of 10 to 14 years old who has hemophilia or vWD (of any severity) and who follows a prophylaxis treatment.
One caregiver—mother, father, other adult family member or other caregiver—who is familiar with the patient’s care.
- Internet access and a device to view online material.
Participation requires
- A child (male, between 10-14 years old) and their caregiver to participate in a total of three 30-minute Zoom meetings, which will be held on consecutive Sundays (dates to be determined.)
- A child and caregiver to progress through an online course on HFA’s Learning Central and utilize a corresponding packet (to be mailed to participants) in between Zoom meetings. The caregiver and child will have separate courses designed specifically for them.
- The child and caregiver to each complete a final evaluation to determine what they have learned, as well as any suggestions for improving the program for future participants.
This project is supported by cooperative agreement DD000008 from the Centers for Disease Control and Prevention of the U.S. Department of Health and Human Services (HHS) as part of an annual financial assistance award totaling $320,000 with 100 percent funded by CDC/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by CDC/HHS, or the U.S. Government.
About the course illustrator:
David Hahn has 25 years experience in the comics world, including work for indie publishers and the comic major brands. His work has appeared in everything from comic books to cookbooks and used behind-the-scenes for storyboards and concept art, as well as mobile apps and nonprofit awareness campaigns. He has also developed his own comics and graphic novels.
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