Throughout the year, NEHA hosts webinars for our community members. Webinars are live events with audio, video and chat capabilities via the internet. 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.
Webinar: Copay Accumulators and Maximizers
Copay accumulators and maximizers are harmful programs that allow Pharmacy Benefit Managers to draw down the full value of the co-pay manufacturer card, while still requiring the patient to pay co-pays and other out of pocket expenses up to the yearly out-of-pocket maximum.
This webinar helped explain the difference between these two programs, why these are harmful to families, what is being done to prevent them, and what you can do if your insurance plan implements one of these harmful practices.
Webinar: Genetic Counseling
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.
Webinar: IEP & 504 Discussion
As students begin a new school year, it is vital for parents and caregivers to have conversations with their teachers, guidance counselors, and school nurses about their child’s chronic condition(s). The New England Hemophilia Association teamed up with the Hemophilia Alliance of Maine for this interactive webinar to provide information about 504’s, IEP’s and IHP’s.
Webinar: 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).
Webinar: 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.
Webinar: 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.
Webinar: Maximizing Your Fundraising Potential
Let’s face it: fundraisers take a lot of time, money, and energy. But it’s not impossible! There are many ways to help you make your fundraising efforts a success. The New England Hemophilia Association (NEHA) has partnered with the National Hemophilia Foundation (NHF) to provide an interactive webinar with proven fundraising tips and tricks to help you think outside the box when it comes time to fundraise for our Annual Walk!
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.