First Step, the first component of the National Hemophilia Foundation’s (NHF’s) Steps for Living, a new Web-based, comprehensive education program for people with bleeding disorders and their families, is now live. Find it on the new Web site: www.stepsforliving.hemophilia.org.
Steps for Living: First Step (ages 0–8) provides families with newly diagnosed children a one-stop resource. First Step has six focus areas: The Basics of Bleeding Disorders; Child Care/School; Treatment; Maintaining a Healthy Body; Family Life; and Insurance. There is also a Resources section.
Within each topic, users will find in-depth information that helps them navigate the new and often-confusing terrain of having a child with a bleeding disorder. Parents will find information on hemophilia treatment centers (HTCs), recognizing the symptoms of a bleed and managing a bleeding disorder. Other topics include managing stress, working with school faculty and staff, and helping children cope with a sibling’s diagnosis. Many of the articles contain helpful tip sheets that can be downloaded and printed.
Next Step (ages 9–15) is scheduled to launch in November 2011. Topics will include advocating for your child in school, transitioning to self-infusion, and encouraging safe sports and good nutrition.
Stepping Out (ages 16–25), expected to go live in December 2011, will focus on the needs of young adults. Topics include becoming responsible for their own medical care, HTC visits and insurance; dating and disclosure; and finding the right college and/or career. Resources for the Adult Patient, which will deal with issues facing aging members of the bleeding disorders community, is scheduled to launch in 2012.
“Steps for Living is going to be a continually expanding site,” says Jennifer Crawford, MPH, NHF’s director of education. “We encourage people to check back with the site often, because we’ll be adding more information and resources as time goes by. As treatments or insurance laws change, for instance, the site will stay relevant for everyone.”
Steps for Living is supported by a cooperative agreement from the Centers for Disease Control and Prevention, and was developed with collaborative funding from Pfizer, Inc.