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Families

“Bleeding Disorders Foundation of North Carolina is important to me because it is a lifesaving tool that helps me in this journey of coping with my son having a bleeding disorder.”

To improve the quality of life for families of children with a bleeding disorder, so that they may HOPE to lead a fulfilling life.

The BDFNC HOPE Program is for ALL families to feel welcome and to offer emotional support and educational resources.

Open to all BDFNC members, HOPE events and activities are designed to meet the specific needs of children with a bleeding disorder. HOPE activities include events throughout the year including educational dinners, retreats, and Zoom Community Conversations meetups. BDFNC can also provide information and materials to help your child succeed in school. 

For parents/guardians looking for more individualized support, BDNFC offers a Peer-to-Peer Mentoring Program. We will pair you with another parent who also has a child with a bleeding disorder and who has “been there, done that” and provide personal and guided support.  

You are not alone in raising a child with a bleeding disorder. 

For more information about the HOPE Program or to be connected with a Peer Mentor, contact us at info@bleedingdisordersnc.org or call 919-319-0014.

Charlie's Story: One Parent's Experience

My son Charlie is an energetic, healthy 8-year-old with severe Hemophilia A. His diagnosis was a big surprise for us! Typically, hemophilia is genetic, with some family history, but that wasn’t the case for us. We have no family history and had never known anyone with hemophilia. As we began to navigate what his life would be like with a bleeding disorder, we felt isolated and overwhelmed. We had so many questions and wanted to learn as much as we could.

Thankfully, we discovered the Bleeding Disorders Foundation of North Carolina (BDFNC)! We attended their annual meeting in March 2017, just before Charlie’s first birthday. We were amazed to find that these events were available to us free of charge, including our hotel room and travel expenses. It was such a blessing to sit around a table, share meals, and have conversations with others who truly understood what we were going through. Hearing stories from others with bleeding disorders, seeing kids running around happy and active, and receiving words of wisdom and encouragement gave us so much hope about Charlie’s diagnosis.

The education we received at that event—and the ongoing events we’ve attended—helped us feel empowered. It was vital for gaining the understanding we needed to make informed decisions about our son’s journey with hemophilia. It also enabled us to advocate for Charlie in situations where he wasn’t receiving the care he needed. Over the years, we’ve continued to attend events and are always learning something new!

I love BDFNC’s mission statement because it so accurately describes what I see them doing. They truly improve the quality of life for the bleeding disorders community in so many ways. They are a source of education, resources, and constant advocacy for our needs. It’s amazing to have an organization so invested in people and genuinely caring about their struggles.

For Charlie, hemophilia will be a lifelong journey, and we know that BDFNC will continue to be a source of support for him as he grows.

The Raleigh Festival & Walk is on Nov 7, register and donate today!

The Raleigh Festival & Walk has passed, but there is still time to donate!

The BDFNC office will be closed from December 22 to January 4 for the holiday season. Please note: All assistance programs will be paused (you can still apply) and applications will be reviewed once the office re-opens.