Journey To Know—A Resource For Women Who May Have a Bleeding Disorder

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Bleeding disorders are conditions in which the blood does not clot normally because certain proteins in the blood are missing or do not work properly.

Up to 1.6 million (or about 1 in every 100) women and girls in the United States have a bleeding disorder, and many are unaware of their condition. The bleeding disorder community includes people living with von Willebrand disease, hemophilia, platelet disorders, and other rare bleeding disorders (called rare factor deficiencies).

Visit our website to learn about the signs and symptoms of bleeding disorders in women.

What is Journey to Know?

Journey to Know is an opportunity for participation in a 3-month program for women as well as people with the potential to menstruate who are more than 18 years of age and have bleeding symptom(s). The National Hemophilia Foundation (NHF) developed the program to help people take the step to work with a healthcare provider and provides support on their journeys to find out the medical reason(s) for their bleeding symptoms.

If diagnosed with a bleeding disorder, treatment is available that can improve a person’s daily quality of life, reduce stress, and prevent dangerous bleeding episodes.

The Journey to Know program, developed by NHF with funding from the Centers for Disease Control and Prevention (CDC), was created as part of the Better You Know campaign. Better You Know raises awareness about bleeding disorders and provides resources for individuals who may be experiencing symptoms of a bleeding disorder but have not been diagnosed.

Journey to Know Resources

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Journey to Know provides women as well as people with the potential to menstruate who are more than 18 years of age the support they need on their journeys to diagnose the medical reason(s) for their bleeding symptoms.

After enrolling in the program, participants will receive

  • Automated check-ins from NHF via email or text to check on progress and encourage participants to continue to seek a diagnosis;
  • Videos to help with next steps, including information about bleeding disorders, resources available through Better You Know, and how to advocate for themselves when speaking to a healthcare provider; and
  • Information about virtual opportunities to interact monthly with others on similar journeys and have questions answered by diagnosed women, as well as providers and experts in the field.

How To Sign Up for Journey to Know

To sign up for Journey to Know, go to NHF’s Journey to Know website to get started.