Making connections. Finding strength. Sharing the journey.
Living with a bleeding disorder, support matters. Connection with others who’ve been there can make all the difference—whether you're learning from their experience or sharing your own.
Zihao lives with hemophilia A.
Real conversations. Real support.
When you meet with a Novo Nordisk Rare Blood Community Liaison (RBCL), you’ll have access to Community University—interactive sessions that offer insights, tips, and shared experiences from both experts and people living with bleeding disorders.
Brianna is a Novo Nordisk Rare Blood Community Liaison. (RBCL)
Brianna and Michael are Novo Nordisk Rare Blood Community Liaisons. (RBCLs)
Topics include:
- Living well with hemophilia or hemophilia with inhibitors
- Pain and emotional health
- Hemophilia in women and girls
- Talking about hemophilia with others
- School and caregiver communication
- Food, fitness, and daily life
Your RBCL can help guide you to topics that matter most—when they matter most.
Connect with your community
Whether you're newly diagnosed or navigating life with a bleeding disorder, you're not alone. These resources can help you build community, find support, and feel seen.
Join the Changing Hemophilia® Facebook community
Follow our Facebook page to connect with others, share experiences, and find inspiration from people who truly understand life with a bleeding disorder.
Find your local NBDF chapter
Use the National Hemophilia Foundation’s Chapter Finder to get connected locally. From community events to educational programs, NBDF chapters bring together people living with bleeding disorders—and those working to make life better for them.
Talk to your Hemophilia Treatment Center (HTC)
Your HTC team is more than medical support—they’re part of your extended community. From health education to help with insurance, school, or work, they’re here to guide you every step of the way.
Brian lives with Factor 8 deficiency.
Talk to someone who gets it
There’s nothing like connecting with someone who’s walked a similar path. Many chapters and clinics offer peer support programs where you can talk one-on-one with someone who understands life with a bleeding disorder—because they live it, too.
Brian lives with Factor 8 deficiency.
Connect with patient advocacy groups
Looking for more information and resources about hemophilia? Visit the organizations below.
Hemophilia Federation of America
Connecting people affected by bleeding disorders to others in their community, while advocating for the development of safe, affordable treatment options.
National Bleeding Disorders Foundation
A nonprofit organization dedicated to education, advocacy, and research of inheritable bleeding disorders.
World Federation of Hemophilia
Committed to improving and sustaining excellent care for people with bleeding disorders across the world.
Hope for Hemophilia
To give hope and strength to individuals and families living with hemophilia by providing resources, education, and emotional support.
CHES Foundation
Supporting patients and families with bleeding disorders through awareness, education, and community-focused programs.
The Coalition for Hemophilia B
Supporting hemophilia B families with programs that build knowledge, advocacy, friendships, and lifelong empowerment.
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