This session was designed for the bleeding disorders community and explored your legal rights in the workplace. It also provided attendees with an overview on health insurance. Our speaker also shared resources for patients on how to afford treatment. A question and answer period followed.

This video is a recording of the Keynote Session at our 2022 vWD Retreat. The speaker is Dr. Veronica Flood, MD, a pediatric hematologist and researcher at the Medical College of Wisconsin.

This session discussed advances in diagnosis and management of von Willebrand Disease (vWD) and highlighted current and forthcoming therapeutic options.

On Wednesday, October 13, we hosted a special interactive webinar featuring Julia Schiller, our fall intern from the Boston University Master’s Program in Genetic Counseling. Julia provided a history of genetic counseling, shared thought-provoking cases, and explained how genetic counselors can help those in the bleeding disorders community.

This was the third and final webinar during our Consumer Medical Symposium.

Dr. Leonard Valentino, CEO of the National Hemophilia Foundation, provided an overview of bleeding disorders and COVID-19, including the effects of the virus and what to know about getting vaccinated.

Click here to read notes taken during this webinar.

Our 3rd Annual von Willebrand’s Retreat took place on Saturday, November 14. This event was focused solely on families living with vWD.

Developed with community feedback, this virtual event was led by professional facilitators and Hemophilia Treatment Center (HTC) providers. The goal of this retreat was to provide community members living with vWD a chance to learn, network, and ask questions in a more focused setting. This is a recording of the virtual event.

This presentation was in partnership with the National Hemophilia Foundation (NHF) and was designed to provide a basic overview of gene therapy for hemophilia in a way that is easy to understand.

During this presentation, Dr. Aric Parnes, MD, adult hematologist at Brigham and Women’s Hospital, offered an overview of current treatments and new therapies on the horizon for von Willebrand’s Disease and other rare bleeding disorders.

As cannabis becomes more mainstream, it is important to understand how those with bleeding disorders may incorporate it as part of their treatment program. This webinar covers the history and legalization of marijuana, legal implications when using and researching cannabis, and specifics on how to access and use cannabis legally.

Genetic counseling is the process of helping individuals and families living with a genetic disorder understand and adapt to the medical, psychological and familial implications of the condition. This webinar was presented by NEHA’s Intern, Janelle Shea, who is a student in the Boston University School of Medicine Master’s Program in Genetic Counseling. In this webinar, Janelle explained the the history of genetic counseling, shared some thought-provoking cases, and helped explain how genetic counselors can assist those living with a bleeding disorder.

During NEHA’s von Willebrand Retreat (vWD), Dr. Salley Pels, Assistant Professor of Pediatrics at the Yale Medical School and the Co-Director of the Yale Hemostasis Center, provided the keynote presentation to all attendees. This webinar provides you with a fundamental understanding of von Willebrand Disease (how it works in the body and the products used to manage the condition), as well as a deeper dive into the more advanced nuances.

During NEHA’s FallFest, Dr. Stacy Croteau, MD, MMS, attending hematologist at Boston Children’s Hospital, gave an introduction to gene therapy. Due to positive feedback about her presentation, Dr. Croteau, delivered her presentation again during a webinar for all community members to watch. This webinar explains what gene therapy is, the history of this potential treatment, an overview of recent and current clinical studies, and an outlook of what this could mean for those living with hemophilia.