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X-WR-CALNAME:Virginia Bleeding Disorders Foundation
X-ORIGINAL-URL:https://vahemophilia.org
X-WR-CALDESC:Events for Virginia Bleeding Disorders Foundation
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DTSTART;TZID=America/New_York:20210408T190000
DTEND;TZID=America/New_York:20210408T200000
DTSTAMP:20260530T022127
CREATED:20210317T161809Z
LAST-MODIFIED:20210317T162647Z
UID:5116-1617908400-1617912000@vahemophilia.org
SUMMARY:VHF/HACA Men's Rap Session
DESCRIPTION:» RSVP Here \nIn partnership with the Hemophilia Association of the Capital Area (HACA)\, we are offering a virtual Men’s Rap Session on a quarterly basis! We are offering these volunteer led sessions in the hopes that during these times of increased isolation we can help to create a network of men who educate and support each other which can lead to better health and stress management. \nThese rap sessions are free and open to men who are constituents of VHF/HACA\, age 21 and up\, and are diagnosed with an inherited bleeding disorder. \nThank you to our sponsor Hemophilia Federation of America (HFA). \nRead this article for more information on how to join a virtual meeting on the zoom platform using a desktop computer\, mobile device/tablet\, from a landline or a mobile phone. If you need assistance or have any barriers that are keeping you from participating in virtual programs please call 804-740-8643 or email info@vahemophilia.org.  \n\nAs we gather virtually to discuss\, share and learn\, we ask that all Virginia Hemophilia Foundation (VHF) virtual program participants be thoughtful in their interactions and follow video meeting etiquette and rules of engagement. Disruptions to a session may lead to the removal and/or disabling of the participant’s video and microphone for part of or for the entire session. Thank you for helping VHF ensure a safe\, productive\, and welcoming environment for all meeting participants and staff. Go here to read video meeting etiquette and rules of engagement.
URL:https://vahemophilia.org/event-program/vhf-haca-mens-rap-session/
LOCATION:Zoom
ATTACH;FMTTYPE=image/jpeg:https://vahemophilia.org/wp-content/uploads/2020/09/49071881157_a9be747366_o.jpg
ORGANIZER;CN="Heather Conner%2C VHF Interim Director":MAILTO:heather@vahemophilia.org
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DTSTART;TZID=America/New_York:20210417T150000
DTEND;TZID=America/New_York:20210417T173000
DTSTAMP:20260530T022127
CREATED:20210304T184352Z
LAST-MODIFIED:20210412T173259Z
UID:5010-1618671600-1618680600@vahemophilia.org
SUMMARY:Medical Symposium
DESCRIPTION:»RSVP HERE\nThe 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. \n» 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! \nWhen 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. \nVHF 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 heather@vahemophilia.org for more information. \nWe could not provide this important event without the help of our generous sponsors. \nPresenter Sponsors: Bayer\, BioMarin\, Genentech\, Sanofi Genzyme\, Spark Therapeutics\, and Takeda\nCorporate Sponsors: CSL Behring\, DrugCo Health\, Pfizer\, and Novo Nordisk \n\nMedical Symposium: Saturday\, April 17th from 3:00 – 5:30 pm\nTopic: Insurance Coverage: Opportunities Today and Challenges for Tomorrow\nPresenters: Kollet Koulianos\, MBA\, Senior Director Payer Relations at National Hemophilia Foundation and Miriam Goldstein\, Director of Policy at Hemophilia Federation of America \nHealth 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. \nTopic: World Hemophilia Day Spotlight\nPresenter: Roddy Doucet\, Philanthropy Manager\, Community Outreach at World Federation of Hemophilia \nTopic: Update on National Hemophilia Foundation’s (NHF’s) Plans and Future Directions for the Bleeding Disorders Community\nPresenter: Leonard Valentino\, MD\, President and Chief Executive Officer at NHF \nJoin 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! \n\nPresenter Sponsors Education Sessions: April 15th – April 30th\nDate: Thursday\, April 15th at 7:00 pm\nSponsor: Genentech\nPresenters: Maya Bloomberg\, ARNP\, MSN University of Miami Hemophilia Treatment Center and Louis\, a HEMLIBRA Ambassador\nTopic: Give it a Shot: A Different Type of Hemophilia A Therapy\nDescription: Join us for an educational session on HEMLIBRA \nDate: Friday\, April 16th at Noon\nSponsor: Bayer\nPresenter: Maya Bloomberg\, ARNP\, MSN University of Miami Hemophilia Treatment Center\nTopic: Meet Jivi\nDescription: 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? \nDate: Thursday\, April 22nd at 7:00 pm\nSponsor: Takeda\nPresenter: Betsy Koval BSN RN\, Senior Clinical Specialist with Takeda\nTopic: VWiD\nDescription: 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. \nDate: Friday\, April 23rd at Noon\nSponsor: Sanofi Genzyme\nPresenters: CoRe Manager\, Xaviette Pointer-Kincy and Physical Therapist\, Jeff Kallberg\nTopic: You Count On Your Joints More Than You Think\nDescription: 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. \nDate: Thursday\, April 29th at 7:00 pm\nSponsor: BioMarin\nPresenter: Dr. Guy Young\, HTC Director\, Children’s Hospital Los Angeles\nTopic: Drug Discovery & Beyond\nDescription: How scientists and the FDA research and evaluate new treatment options for you. \nDate: Friday\, April 30th at Noon\nSponsor: Spark Therapeutics\nPresenter: Laureen Temple\, Patient Education Lead\, Spark Therapeutics\nTopic: Understanding Gene Therapy Research and Its Potential Application to Hemophilia\nDescription: 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. \n\n					This session is free and open to VHF constituents\, any constituent under the age of 12 will need adult supervision to participate. As we gather virtually to discuss\, share and learn\, we ask that all Virginia Hemophilia Foundation (VHF)virtual program participants be thoughtful in their interactions and follow video meeting etiquette and rules of engagement. Disruptions to a session may lead to the removal and/or disabling of the participant’s video and microphone for part of or for the entire session. Thank you for helping VHF ensure a safe\, productive\, and welcoming environment for all meeting participants and staff. Go here to read virtual meeting etiquette and rules of engagement.
URL:https://vahemophilia.org/event-program/medical-symposium/
LOCATION:Zoom
ORGANIZER;CN="Heather Conner%2C VHF Interim Director":MAILTO:heather@vahemophilia.org
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