Hemophilia A support groups and resources

Last updated Nov. 18, 2024, by Susie Strachan
Fact-checked by Inês Martins, PhD

When putting together a support network for managing hemophilia A, start by reaching out to people who may be able to offer help, such as your family, friends, and others who have the bleeding disorder.

Hemophilia A is caused by mutations in the F8 gene, which interfere with the normal production of a blood clotting protein called factor VIII. When your blood doesn’t have enough factor VIII, you may bleed easily or have a harder time controlling bleeds.

Talking with others who know what you are experiencing — whether you’re living with hemophilia A or caring for someone with the disease — can be a way to better understand the disease, hear about coping strategies, and get emotional support.

Support groups

A hemophilia A support group may provide resources and an understanding community for learning about living well with your condition.

You may get information about online or in-person hemophilia A support groups through hemophilia treatment centers, national or international organizations, online communities, and social media platforms.

Organizations for finding virtual and local support groups include:

Online support

Online groups and social media platforms can be a space for sharing and getting information, practical support, and emotional well-being tips from the hemophilia A community.

Facebook groups, such as Hope for Hemophilia, and other hemophilia-dedicated social media groups, can connect you with other people who have the condition.

Hemophilia News Today hosts forums where people with hemophilia and caregivers can discuss a number of topics. It also has a Facebook page with news stories and columns where people affected by hemophilia share their experiences firsthand.

Information for people with hemophilia A

Learning you have hemophilia A can feel overwhelming, especially right after your diagnosis, when you may be unsure how this will affect you in the future.

Symptoms can range from bleeding only after injury to spontaneous bleeding episodes, depending on whether your hemophilia A is considered mild, moderate, or severe.

Understanding the severity of your condition is key to managing it and planning your treatment.

When looking for information, start by consulting reputable organizations, healthcare providers who specialize in hemophilia, and reliable online resources, such as Hemophilia News Today.

Along with providing information about the latest treatment options, Hemophilia News Today has educational articles on topics such as replacement therapies and innovative gene therapies.

In the U.S., national organizations such as the National Bleeding Disorders Foundation and the Hemophilia Federation of America offer educational support and resources for hemophilia A and other bleeding disorders.

In addition to care, hemophilia treatment centers may offer services such as hemophilia A education and counseling.

Financial resources

Medical and other healthcare costs for managing hemophilia A treatment can add up quickly.

In the U.S., managing hemophilia A can be financially challenging, with treatment expenses sometimes reaching $870,000 a year for people with severe hemophilia.

These costs include medical expenses, such as prophylactic and on-demand treatments to prevent and control bleeds, emergency care, and loss of income if your ability to work is affected.

But there are financial assistance programs and other resources that you may want to consider.

For example, you may qualify for Medicaid, Social Security Disability Insurance, Supplemental Security Income, or other government assistance programs.

Various state programs and pharmaceutical copay assistance programs can help with medication costs, including approved treatments for hemophilia A.

Pan Foundation is an organization that may be able to offer general financial aid.

Educational support

World Hemophilia Day, which is observed each year on April 17, provides further avenues for education and advocacy efforts within the community.

Conferences and other events, such as the annual conference of the National Bleeding Disorders Foundation, can also be a source of education and information, along with networking opportunities for people living with hemophilia A.

Medical information

Hemophilia treatment centers are specialized centers that bring together a range of healthcare professionals, such as hematologists, orthopedists, genetic counselors, and social workers, to offer coordinated care to people with hemophilia.

Be sure to consult your care team if you’re considering new treatments, notice changes in your symptoms, or making other decisions about your health. Online content should complement, but not replace, medical advice from a qualified expert.

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.