Throughout the year, NEHA hosts webinars for our community members. Webinars are live events with audio, video and chat capabilities. This allows members of the New England bleeding disorders community to get involved with our chapter and ask questions without needing to travel to one of our events.
Von Willebrand Retreat
Our 4th Annual von Willebrand’s Retreat took place on Saturday, July 17. This event was focused solely on families living with vWD.
This recording is of the Keynote Presentation with Dr. Christopher Walsh. Dr. Walsh spoke about the evolution of care for people with vWD, including where we are now with treatment and where we are heading.
COVID-19 & Bleeding Disorders
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.
Current Therapies Panel Discussion
This panel discussion took place during our Virtual Consumer Medical Symposium. This was focused on current treatments for bleeding disorders.
The panel included: Salley Pels, MD, RI Hospital; Jeremy Madrid, MD, Dartmouth Hitchcock; Shelia O’Donnell, APRN-FNP, Maine Medical Center; and Emily Bisson, CPNP-PC, Connecticut Children’s Medical Center.
Von Willebrand’s Retreat
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.
Genetic Counseling for Bleeding Disorders
In this webinar, participants learned about genetic counseling for bleeding disorders by discussing patient cases to better understand how genetic counselors can help those in the bleeding disorders community.
Gene Therapy Basics for Hemophilia
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.
Understanding Research: It Starts with a Zebrafish
This presentation helped explain the importance of Zebrafish related to bleeding disorders treatment and will introduce you to the Judith Graham Pool Research Fellowship. In 2019, NEHA made a large financial contribution to support this program and the great work it does for our community. This talk also explained different kinds of research, like: market research, HTC research, patient advocacy research and clinical research.
Treatment for vWD & Other Rare Bleeding Disorders
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.
The Shifting Paradigms of Hemophilia Treatment
Here, Dr. Cathy Rosenfield, MD, Tufts Floating Hospital for Children provided an overview of the current and emerging treatment landscape for people with hemophilia. During this talk, she addressed topics like: the pros and cons of current and emerging therapies, standard and extended half-life factor replacement therapies, subcutaneous therapies, and gene therapy.
Medical Marijuana & Pain
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.
COVID-19 & Bleeding Disorders
This webinar focused on the Coronavirus (COVID-19) pandemic, and how this relates to the bleeding disorder community and treatment options.
Dr. H. Cody Meissner, MD, Chief of the Division of Pediatric Infectious Disease and Dr. Cathy Rosenfield, Pediatric Hematologist and Associate Professor of Pediatrics came together to facilitate this discussion and to provide resources for our community.
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. Janelle Shea is a student in the Boston University School of Medicine Master’s Program in Genetic Counseling and spent her fall 2019 semester interning at NEHA. 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.
Pros & Cons of Hemlibra Therapy
The U.S. Food and Drug Administration (FDA) recently approved Hemlibra (Emicizumab), a new subcutaneous treatment for hemophilia A with or without inhibitors. To help the bleeding disorders community better understand this therapy, the Boston Hemophilia Center and the New England Hemophilia Association (NEHA) hosted an educational webinar about the pros and cons of Hemlibra (Emicizumab).
Von Willebrand Disease: Diagnosis & Treatment
During NEHA’s Inaugural 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.
A Patient’s Perspective: Clinical Trials & Emerging Therapies
How do you decide whether or not to participate in a clinical trial? What does informed consent mean? What are good questions to ask your provider about new approved treatments and emerging therapies? These are just some of the questions that were answered by a panel of community members in this educational webinar.
Innovations in Care: Gene Therapy
During NEHA’s FallFest meeting, 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, recorded it again live via a webinar for all community members to watch. This one-hour webinar explained 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.