Building your hemophilia B community

Last updated June 3, 2024, by Susie Strachan 

 

Connecting with others who have hemophilia B can help you find a community you can turn to for support, both informational and emotional. It can be a way to share what it’s like living with hemophilia B, including talking about daily life, symptoms, and treatments, such as newer ones like gene therapy.

Talk with your healthcare team

While it’s important you trust your hemophilia B healthcare team to treat your symptoms or those of your child, you should also be able to rely on them to support you emotionally, listen to your concerns, and be an active member of your hemophilia care community.

The patient-provider relationship is the foundation of shared decision-making, so learning how to talk with your doctor can help ensure you get the best healthcare and stay up to date on treatment options, especially when considering different treatments, such as gene therapy.

Your doctor also may be able to recommend local and online communities of peers living with hemophilia B and other parents with children and teens who have the disease.

Hemophilia Treatment Centers in the U.S. and Canada are another great healthcare resource. These offer support groups and patient education programs for people with hemophilia B and their families.

Check with patient organizations

Patient advocacy organizations dedicated to hemophilia B offer events and opportunities to connect with others in the hemophilia B community. They also are another way to learn about new and emerging therapies.

In the U.S., national hemophilia organizations include:

NBDF’s online educational programs include topics such as insurance, clinical trials, and gene therapy for hemophilia. HFA offers Learning Central and The Coalition for Hemophilia B has B Education Hub as well as a list of upcoming events.

International organizations include:

These organizations arrange both online and in-person opportunities to meet and connect with groups such as:

  • parents of newly diagnosed children
  • teenagers and young adults
  • adults and seniors.

Make conference connections

Conferences focused on hemophilia B are another way to make connections with others in your community.

These events often include workshops and panel discussions where people share their personal stories and insights into living with hemophilia B or caring for a child with the bleeding disorder. By hearing from others who have firsthand experience, you can gain knowledge, perspective, and coping strategies.

Conferences also offer educational opportunities to learn about the latest advancements, research findings, treatment options such as gene therapy, and management strategies for hemophilia B.

Hemophilia News Today columnist Joe MacDonald wrote about attending his first bleeding disorders conference in 1998 with his family, including his then-2-year-old son who has hemophilia B. It left them “feeling more hopeful as we learned that we weren’t alone on our medical journey” and were now part of the hemophilia B community.

“With our new friends, we felt something we hadn’t experienced in a while: freedom,” writes MacDonald about what he calls a life-changing conference.

Social media and podcasts

Community connections also can be made virtually through social media or by listening to podcasts focusing on hemophilia B.

Online forums are a good place to start, including the forums here at Hemophilia News Today, along with social media groups on Facebook, Reddit, and Instagram. You can find Hemophilia News Today on Facebook, X, and Instagram.

These virtual communities coordinate groups where people and families affected by hemophilia B can connect, ask questions, share advice, and offer support to one another.

Podcasts, such as “B’s in a Pod,” “BloodStream,” “Gene Therapy for Hemophilia: Dream or Reality?”, offer inspiration, education, and entertainment, including interviews with healthcare professionals, advocates, and people living with bleeding disorders.

Tune in via your computer, smartphone, or tablet by searching for podcasts related to hemophilia B on iTunes, Google Play, or wherever you find your favorite podcasts.

Camaraderie at camp

Going to a summer camp for children with hemophilia B gives them the opportunity to bond with others who understand their condition, while singing around the campfire, doing arts and crafts, and trying activities such as swimming and sports with modified rules.

Your child may learn practical skills and strategies for dealing with hemophilia B in daily life, which can foster confidence and independence while making lasting friendships.

For older children and teens, there may be skill-building sessions on managing the condition, administering treatments, preventing bleeds, and learning to talk to others about their bleeding disorder.

Family camps and retreats for hemophilia B are designed for all ages, with a focus on strengthening family relationships, building communication, and support networks. Along with entertainment and fun activities, these camps may offer informational sessions for parents and caregivers, medical management workshops, and group discussions on coping strategies and resilience.

Camps should be equipped to handle the unique medical needs of children who have bleeding disorders like hemophilia B, with trained staff who are knowledgeable about the condition and experienced in bleeding disorders.

To find a camp, contact your local HFA chapter.

Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.


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