National Organizations

Coalition for Hemophilia B

The Coalition for Hemophilia B, Inc., strives to make quality of life the focal point of treatment for people with hemophilia B and their families through education, empowerment, advocacy, and outreach. To learn more, visit the Coalition for Hemophilia B’s website.

Foundation for Women & Girls with Blood Disorders

The Foundation for Women & Girls+ with Blood Disorders works to ensure all women and girls with blood disorders, including von Willebrand disease (VWD and other factor deficiencies, are correctly diagnosed and optimally managed at every life stage. Resources for both patients and providers can be found on their website.

Hemophilia Federation of America (HFA)

Hemophilia Federation of America (HFA) is a community-based, patient-centered organization committed to championing the needs of families living with debilitating bleeding disorders. They advocate for safe and effective therapies and quality, affordable health coverage.

HFA offers a library of online courses on various topics relating to life with a bleeding disorder. Patients and caregivers can take these courses at their own pace to learn more.

National Bleeding Disorders Foundation (NBDF)

The National Bleeding Disorders Foundation (formerly the National Hemophilia Foundation) is dedicated to finding cures for inheritable blood and bleeding disorders and to addressing and preventing the complications of these disorders through research, education, and advocacy enabling people and families to thrive. They support research that has a measurable impact on people’s lives; deliver education that helps people with bleeding disorders and their family members thrive; and advocate for policies at the state and local level that protects access to healthcare.

Steps for Living

The National Bleeding Disorders Foundation has a website called Steps for Living, which is dedicated to education and resources organized by stage of life: First Steps (Birth-8 Years), Next Step (9-15 Years), Step Up (16-25 Years), and Step Out (Adults).

Victory for Women

Victory for Women is the National Bleeding Disorders Foundation’s health initiative that creates and provides support, education and resources for women and providers in the bleeding disorders community.

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