Bleeding.org Conversations

This episode follows bleeding disorders treatments from lab bench to the patient in the chair. On one end, the science: a pipeline that in the last decade has delivered gene therapy, factor-mimetic therapies, and rebalancing agents —treatments that have transformed how people with bleeding disorders live. On the other end, the reality of an HTC: what it takes to translate those advances into a patient's treatment plan, and what happens when insurance, geography, or missed diagnosis get in the way. Our two guests are hematologists experienced in both research and treating patients. Dr. Pipe and Dr. Kouides speak on the science and the standard. The goal is to make the diagnosis-to-treatment arc legible to listeners and to be honest about where the translation still breaks down.   The National Bleeding Disorders 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.  NBBF has information about current and future therapies on our website: Current therapies: https://www.bleeding.org/bleeding-disorders-a-z/treatment/current-treatments Future therapies: https://www.bleeding.org/bleeding-disorders-a-z/treatment/innovative-therapies Connect with NBDF at our website https://www.bleeding.org/ or follow us on Instagram https://www.instagram.com/nbd_foundation or on Facebook https://www.facebook.com/NationalBleedingDisordersFoundation

For generations, women and girls with bleeding disorders have been told they couldn't have a bleeding disorder. This episode is about why that is, and what needs to change. Guest Magdalena Lewandowska, MD, a hematologist and associate director from IHTC/Innovate Hematology, answers key questions about the path to diagnosis, how to find a doctor who truly understands your symptoms, and what treatment options are available. Our goal is to make the scope of this problem visible, give listeners concrete next steps, and push for what still needs to change. The National Bleeding Disorders 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.  If you think you have the symptoms of an undiagnosed bleeding disorder, there are screening tools you can use to help. Visit NBDF's https://www.betteryouknow.org/ to learn more about your symptoms, find out if you are at risk, and learn what next steps you can take to getting treatment and care.    Connect with NBDF at our website https://www.bleeding.org/ or follow us on Instagram https://www.instagram.com/nbd_foundation or on Facebook https://www.facebook.com/NationalBleedingDisordersFoundation

 This episode is about the women and girls who were told they couldn't have a bleeding disorder — and everything that followed. Guest Magdalena Lewandowska, MD, a hematologist from IHTC/Innovative Hematology, answers questions about the path to diagnosis, how to find a doctor who understands you, and treatment options. The goal of the hour is to make the scope of the problem visible, give listeners specific things to do, and push on what still has to change. Bleeding.org Conversations is presented by the National Bleeding Disorders Foundation and is produced by the Talk About It Company.