At this time our families initiative is led by the Dads in Action program, which contains resources geared to both parents, as well as information about local events for Dads and children. Identifying specific needs and interests of other family members is a natural next step in growing HFA’s programs and services for the bleeding disorders community. Check back often to see how as our family resources grow in the coming year.
If the average mom is a master multi-tasker, the mom of a child with a bleeding disorder takes that to another level. The challenges of tending to family members’ physical, intellectual and emotional needs while juggling doctor’s appointments, infusion schedules and unexpected bleeding episodes can be draining and difficult. Luckily, this tough balancing act doesn’t have to be done alone. By providing tools that help you gain knowledge about bleeding disorders, develop positive parenting solutions, and adopt healthy behaviors, HFA is committed to helping moms feel confident in their ability to make educated decisions and feel ongoing support from the community and our organization.
- Read our Mom’s Blog
- Moms are welcome to join the Dads in Action webinars, check out our webinar calendar for upcoming broadcasts.
- See what parents are sharing in our collection of videos and stories in Community Voices. (see list of some videos below)
- Visit our Resource Library for educational materials.
Videos & Stories
- Julie Mora
- Family Focused
- A Mother’s Perspective
- Our Journey
- A Better Life
- Let Him Go Let Him Grow
- Any Port in the Storm
- The Bright Side
- Whatever He Wants
- Thank You Obamacare
- Adopted into Hemophilia
Children & Teens
Every child is unique, and every family deals with different issues. When your child has a bleeding disorder, some of those issues are not what you anticipated when you envisioned being a parent. Kids’ understanding of illness, and their reactions and coping strategies change as they grow older. As they grow in both knowledge and experience, they will see that having a bleeding disorder presents not only challenges, but also some wonderful opportunities.
See what teenagers and children are sharing in our collection of videos and stories in Community Voices. (see list of some videos below)
- Beyond Hemophilia
- Step by Step Infusion
- Kyle & Jesse: A Young Perspective
- The Bright Side
- My Camp Family
- Growing Up Different
- You are not alone!
Partners & Spouses
Successful relationships require partners and spouses to support and love one another during both joyful and stressful circumstances. Having a partner or spouse with a bleeding disorder provides an additional challenge. Many spouses and partners help with infusion, navigate health insurance processing and provide unconditional emotional support. As a partner or spouse, self-care is critical and HFA provides tools and connections to help you understand that you are not alone.
- Attend the Partners & Spouses webinars, check out our webinar calendar for upcoming broadcasts
- Find a local HFA Member Organization to connect with other partners & spouses in your area, check out our list of member organizations to find the one nearest you
Participate in a National Webinar
Throughout the year, we offer webinars of interest to families living with a bleeding disorder. Please check out our webinar calendar to find a webinar of interest to you.
Attend a Meeting or Event
Attend an HFA meeting or fundraising event and join families from across the country as they come together to connect, learn, and support each other.
Be an Advocate
Help make a difference for people with bleeding disorders by joining HFA and other community members in advocacy initiatives.