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HACA/VHF Advocacy Committee Virtual Chat

Join the HACA/VHF advocacy committee as we present our first in a series of virtual chats. These chats will focus on advocacy topics relevant to the bleeding disorders community. During the first virtual chat, we will discuss the disposition of legislation we followed during the 2020 General Assembly session including bills we opposed and supported and we will also attempt to predict what might happen when the General Assembly returns on April 22nd. We will also spend some time talking about how COVID-19 is affecting you and yours as we maintain social distancing measures. All virtual chats will be recorded if you are unable to join us live online. When you register you will receive instructions on how to join in, either by video conference or phone call. Please join us!

Virtual Annual Education Meeting – Session #1: Maintaining Joint Health Through Exercise – Get Up and Move

Online

Get Up and Move is a program focused on maintaining joint health through exercise. This program will be presented by Dr. Jeffrey Kallberg, an experienced physical therapist and hem A patient. Through this program, we hope to inform you on three areas: how joints work, how your body moves, and simple exercises that you can do to help strengthen your joints and maintain joint health. We look forward to seeing you there!

Virtual Annual Education Meeting – Session #2: Advocacy Not Anger: Being Your Own Voice

Online

As members of the bleeding disorders’ community, we’ve all likely had experiences where our bodies, our providers, and/or our health care system has failed us or a loved one. And this has made us angry. You yell! You scream! But what good has that done? Hear from a panel of local VHF members about their lives as tireless (and often angry) bleeding disorders’ advocates. Learn the importance of record keeping and controlled advocacy; gain strategies for working with your providers and insurance to get what you need; and acquire tools for establishing a reasoned voice within the community, a voice that people listen to. Whether you are new to advocacy or have been a life-long advocate yourself, let VHF & their community members inspire you to turn your anger into something powerful and useful - advocacy!

Virtual Annual Education Meeting – Session #3: Beyond Trough Levels: Taking A Closer Look at How to Evaluate Hemophilia B

Online

Ever wonder why Hem B patients sometimes bleed with relatively high trough levels and conversely don’t always bleed with lower trough levels? To answer this, it is important to understand that Factor VIII and Factor IX work differently in the body. Hence the differences between Hemophilia A vs. Hemophilia B. Factor VIII stays inside the bloodstream, while Factor IX also goes outside the bloodstream by traveling through the walls of blood vessels. Trough levels will only identify factor that is in the bloodstream. That’s why for Hemophilia B, just measuring trough may not tell the full story of what your factor replacement is doing, and you may need more information.

Virtual Annual Education Meeting – Teen Session: The Power of Empowerment

Online

Learn to acknowledge strengths, embrace individuality, create safe environments, enhance confidence, establish supporting partnerships and more.

Post Webinar Teen Hangout with Camp Holiday Trails!

Join Camp Holiday Trails staff for this fun zoom hangout filled with your favorite camp friends, games, songs and more!