April 17 @ 3:00 pm - 5:30 pm
The VHF Medical Symposium will provide consumers with the knowledge needed to discuss emerging and current treatment options and have conversations around access to care and insurance trends, as well as recognize World Hemophilia Day.
» Please go here to view our Virtual Medical Symposium Program. This program is one way our generous sponsors can virtually connect with the community by providing links to their electronic resources, brochures, websites, social media sites and more!
When you RSVP for this program you will receive one zoom link for all sessions, you are welcome to join us for one or for all – see below for more details.
VHF constituents will receive a gas and/or grocery gift card. Value will be connected to the number of sessions you attend with a maximum value of $50. If you are a constituent that lives outside of the VHF coverage area and you are interested in registering for this meeting, please email email@example.com for more information.
We could not provide this important event without the help of our generous sponsors.
Presenter Sponsors: Bayer, BioMarin, Genentech, Sanofi Genzyme, Spark Therapeutics, and Takeda
Corporate Sponsors: CSL Behring, DrugCo Health, Pfizer, and Novo Nordisk
Medical Symposium: Saturday, April 17th from 3:00 – 5:30 pm
Topic: Insurance Coverage: Opportunities Today and Challenges for Tomorrow
Presenters: Kollet Koulianos, MBA, Senior Director Payer Relations at National Hemophilia Foundation and Miriam Goldstein, Director of Policy at Hemophilia Federation of America
Health coverage is essential for people with bleeding disorders. This session will look at health insurance developments in the present and on the horizon. We will talk about the American Rescue Plan, signed into law just last month, which provides new opportunities for people to get health insurance, upgrade coverage, and/or lower their costs for coverage. We will hear an update on accumulator adjusters: how these strategies impact patients, and what is next on the advocacy front. And we will look into the future, forecasting how insurers are likely to respond to the advent of gene and novel therapies.
Topic: World Hemophilia Day Spotlight
Presenter: Roddy Doucet, Philanthropy Manager, Community Outreach at World Federation of Hemophilia
Topic: Update on National Hemophilia Foundation’s (NHF’s) Plans and Future Directions for the Bleeding Disorders Community
Presenter: Leonard Valentino, MD, President and Chief Executive Officer at NHF
Join VHF as we host a presentation by the CEO of the NHF, Dr. Leonard Valentino. We are thrilled to have Dr. Valentino come to speak to our community to share his thoughts on NHF’s mission and vision, how COVID will impact the bleeding disorders community in the future, COVID vaccines, VWD Guidelines and advocacy, a NHF Bleeding Disorders Conference teaser and highlights of the national research blueprint. There will be time for questions and discussion – you will not want to miss this opportunity to engage with a national leader of the bleeding disorders community!
Presenter Sponsors Education Sessions: April 15th – April 30th
Date: Thursday, April 15th at 7:00 pm
Presenters: Maya Bloomberg, ARNP, MSN University of Miami Hemophilia Treatment Center and Louis, a HEMLIBRA Ambassador
Topic: Give it a Shot: A Different Type of Hemophilia A Therapy
Description: Join us for an educational session on HEMLIBRA
Date: Friday, April 16th at Noon
Presenter: Maya Bloomberg, ARNP, MSN University of Miami Hemophilia Treatment Center
Topic: Meet Jivi
Description: This Jivi Patient Program will review: What is Jivi? What is the safety and bleed protection information for Jivi? What additional resources can I expect from Bayer?
Date: Thursday, April 22nd at 7:00 pm
Presenter: Betsy Koval BSN RN, Senior Clinical Specialist with Takeda
Description: Come experience a story from a real VONVENDI patient about their journey of being diagnosed and living with von Willebrand disease (VWD). Our goal is to continue to educate the VWD community with impactful, relevant VWD programs. The VWiD program provides the opportunity for members to hear stories, receive information, and connect with other members of the community.
Date: Friday, April 23rd at Noon
Sponsor: Sanofi Genzyme
Presenters: CoRe Manager, Xaviette Pointer-Kincy and Physical Therapist, Jeff Kallberg
Topic: You Count On Your Joints More Than You Think
Description: You’re someone who uses their joints every day. Join us for an interactive educational experience to learn how you can count on ELOCTATE to protect you and your joints from bleeds. You’ll find out more about how we use our joints for everyday activities, the latest data about ELOCTATE and how it works, and how you can count on us for an array of support resources.
Date: Thursday, April 29th at 7:00 pm
Presenter: Dr. Guy Young, HTC Director, Children’s Hospital Los Angeles
Topic: Drug Discovery & Beyond
Description: How scientists and the FDA research and evaluate new treatment options for you.
Date: Friday, April 30th at Noon
Sponsor: Spark Therapeutics
Presenter: Laureen Temple, Patient Education Lead, Spark Therapeutics
Topic: Understanding Gene Therapy Research and Its Potential Application to Hemophilia
Description: This presentation is intended to walk you through the journey that started over 50 years ago with the beginnings of gene therapy research. We will walk through the basics of genetics and how that plays a role in hemophilia. With that knowledge, we will look at how gene therapy is meant to work, and discuss both the potential for and the challenges of investigational gene therapy research today.