How to find support groups and resources for hemophilia C
Fact-checked by Joining an in-person or online hemophilia C support group can be a great way to meet people who understand what it’s like living with hemophilia C. These groups also offer a chance to learn more about hemophilia C from those who are dealing with it directly, including caregivers.
Hemophilia C is rarer than hemophilia A and B, but all three are bleeding disorders that affect the blood’s ability to clot.
A mutation in the F11 gene causes hemophilia C by interfering with the body’s ability to produce a blood clotting protein called factor XI. Those living with hemophilia C are at risk for prolonged bleeding after surgery or an injury.
Hemophilia C support groups share advice about managing the condition while offering emotional support to help you feel less isolated.
Family members and caregivers may also find community, including getting practical support, such as for a parent raising a child living with hemophilia.
Support groups
Start by asking your healthcare team for recommendations about hemophilia C support groups and resources, or reach out to hemophilia treatment centers. They sometimes host their own hemophilia support groups or can suggest where to find one.
Bleeding disorder conferences are another great place to learn about support groups and other hemophilia resources.
In the U.S. and Canada, you can find local support groups through national organizations such as:
- Hemophilia Federation of America
- Canadian Hemophilia Society
- National Bleeding Disorders Foundation
- Bleeding Disorders Advocacy Network
International organizations can also connect you with resources and information about groups. They include:
Online support
Participating in online communities and forums is another option for finding hemophilia C support. For instance, hemophilia-focused social media groups often offer online resources.
Hemophilia News Today is an online resource that features discussion forums on a variety of topics. Its Facebook page posts news, research updates, and community stories about living with hemophilia.
Information for people with hemophilia C
To learn more about hemophilia C, begin with your healthcare providers, credible online resources, and reputable organizations. Trustworthy sources provide accurate, up-to-date information supported by scientific research on the condition’s causes, symptoms, diagnosis, and treatment.
- In the U.S., the Hemophilia Federation of America and the National Bleeding Disorders Foundation offer hemophilia C education materials, resources, and support.
- North American hemophilia treatment centers provide specialized, comprehensive care for bleeding disorders. These centers commonly offer educational materials, support, and counseling to patients and their families.
- For those in Canada, the Canadian Hemophilia Society provides hemophilia C resources, support, and information.
- You can follow Hemophilia News Today to stay informed about the latest news, research, and information on hemophilia.
Financial resources
Hemophilia C doesn’t typically require treatment unless an injury causes bleeding, or during surgery and procedures that can cause bleeding.
For this reason, the day-to-day cost of treating hemophilia C is generally lower than that of hemophilia A or B. Still, overall costs can be significant depending on your specific needs and the severity of the bleeding.
You can look into the following resources that may offer financial assistance for hemophilia C. Government assistance may also be available through state-sponsored or federal programs.
- The Assistance Fund
- Co-Pay Relief
- Hope Charities
- Pan Foundation
- State Pharmaceutical Assistance Programs
Educational support
Public symposia and conferences, such as the Hemophilia Federation of America’s Annual Symposium, provide valuable education and resources. Webinars, podcasts, and videos also serve as excellent sources of information about hemophilia C and offer practical advice about living with the condition.
Medical information
Hemophilia C education often begins with your healthcare team. You should always be able to rely on your care team for help managing hemophilia C, advice when considering a new treatment, and guidance if you notice that your symptoms are changing or worsening.
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.
