HFA knows your time is precious and has compiled a series of toolkits with presentations, downloadable resources, and links to other sites on a variety of topics.
Click on the icon or title of a toolkit below or in the menu on the left to learn more about an area of interest or concern to you. Check back on this page as we add new toolkits throughout the year.
|Back to School Toolkit: Sending your child with a bleeding disorder to school can be an overwhelming experience. This toolkit includes a customizable PowerPoint for you to use as a teaching tool for your child’s school staff.|
|Pain Toolkit: Pain is a serious medical concern in America. For those with a bleeding disorder, pain as a result of a bleeding episode can result in acute and/or chronic pain issues.|
|Off to College Toolkit: The road to independence and adulthood often travels through a college town. In this toolkit, you’ll find resources about preparing and making the transition from high school to campus life. This toolkit has resources that are specific to living with a bleeding disorder and others that are more general.|
|Safety Toolkit: This list of resources can help to protect and prevent accidents that can happen whether you have a bleeding disorder or not. View these tools as ways to raise your awareness to keep you and your family safe.|
|Women Bleed Too! Toolkit: Women can and do have bleeding disorders. Bleeding disorders among females may cause special challenges because of the bleeding associated with menstruation and childbirth. Menorrhagia is abnormally heavy and prolonged menstrual period and is the most common symptom among females with a bleeding disorder.|
|Coping with Siblings Toolkit: Sibling rivalry isn’t unique to parents raising a child with a bleeding disorder. However, when one child is diagnosed with hemophilia or von Willebrand Disease (vWD), it affects the entire family dynamic. This toolkit includes resources intended to help parents deal with what is almost inevitable – sibling rivalry.|
|Bullying Prevention Toolkit: Students with special needs, such as hemophilia and other bleeding disorders, are at a higher risk of being bullied. Kids with hemophilia may become a target when they use crutches, are limited to certain activities during recess/gym classes, have a visible PICC line/port, or miss several days of school due to bleeding episodes.|
|Be Prepared Toolkit: Persons with (or caring for someone with) a bleeding disorder should take proactive steps to be ready for all sorts of circumstances – natural disaster, planning for the inevitable emergency room visit and prepping for travel.|
|Employment Issues Toolkit: Whether you have a bleeding disorder yourself or you are a caregiver to someone with a bleeding disorder, it is often a juggling act to live with a chronic condition and maintain your livelihood. This toolkit is comprised of resources from a variety of sources related to employment issues including information about the Family Medical Leave Act (FMLA), the Americans with Disabilities Act (ADA), job training and disclosure issues.|
|Emergency Room Toolkit: Living with a bleeding disorder can often mean frequent visits to emergency rooms. Becoming a strong self-advocate and developing good communication skills with providers can lead to better health outcomes. This toolkit offers resources to help you be a better partner in you or your child’s healthcare.|
|Healthy Bodies Bleed Less Toolkit: Proper nutrition, combined with safe and effective exercise, is important for everybody. HFA’s health and wellness program, FitFactor offers services designed to help those living with a bleeding disorder improve health, fitness, and quality of life through regular physical activity and proper nutrition.|
|Clinic Communications Toolkit: Living with a chronic condition, like a bleeding disorder, can often mean yearly visits to a Hemophilia Treatment Center, frequent visits to doctor’s offices, and hospitals. Becoming a good self-advocate and developing good communication skills with providers can lead to better health outcomes. This toolkit offers resources to help you be a better partner in your or your child’s healthcare.|