Unite For Bleeding Disorders |
Thank you to everyone that has fundraised and donated toward Unite For Bleeding Disorders - because of your generosity we have raised $23,605 so far! Help us reach our goal of $35,000 by going here and donating today. Every dollar raised for Unite For Bleeding Disorders stays 100% local to VHF and goes toward supporting our many educational events, advocacy efforts, and community programs.
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Hemophilia Federation of America (HFA) Annual Patient Fly-In |
VHF constituents joined HFA for their 9th annual Patient Fly-In on September 19th in Washington DC. They joined about two dozen other community members and made Congressional visits to make the voices of the bleeding disorders community heard!
VHF constituent and volunteer Sam Petty had this to say "At the HFA Fly-In I had the pleasure of advocating for the Bleeding Disorder Community, of which I am a part. I learned of a few predatory practices of Insurance Companies and how we can go about protecting ourselves from them. I stood in a room with mother's and father's of patients, as well as fellow patients testifying of the struggles we face and the actions we need from our representatives. The power of the words said in these meetings was immense. I'd like to thank HFA for this opportunity to represent my community. Thank you."
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HFA Webinar - Unspeakable: Let's Talk About It (Part 1) |
Tuesday, October 25 at 7:00 pm
Join HFA and hear from Robert C. Cooper, Blood Brother, Creator, Writer, Director, and Executive Producer of the TV series “Unspeakable.” Based on first-person experience and non-fiction accounts, “Unspeakable” is a mini-series that chronicles the emergence of HIV and Hepatitis throughout Canada during the early 1980-90s and the tragedy that resulted after thousands with bleeding disorders were infected by tainted blood. Join Rob and special guest panelists for this Q & A session. AMC currently owns the show “Unspeakable” and has generously offered to provide access to community members for education purposes. When you register for this webinar you will receive instructions on how you can access AMC for 1 FREE month.
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Open Enrollment for Marketplace Insurance |
National Hemophilia Foundation (NHF) Wednesday Webinar: Genetic Counseling for Ultra-Rare Bleeding Disorders |
Wednesday, October 12, at 2:00 PM
NHF's Wednesday Webinars are a free education series open to providers and community members. Register to attend and learn more about Genetic Counseling for Ultra-Rare Bleeding Disorders with speaker Tahnee Causey, MS, CGC. Tahnee may look familiar as she is a VHF board member and is employed by VCU Health where she works as a Genetic Counselor and Program Director. |
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Virtual – Advocacy Education “Testifying and Serving on Boards and Commissions” |
Thursday, October 20th at 12:00 pm - Zoom
Join constituents, advocacy committee members, and community stakeholders from throughout Virginia for a virtual advocacy education meeting and learn about developing and providing testimony in legislative and regulatory meetings, as well as applying and serving on local and state-based boards and commissions. |
Virtual – Women’s Education + Connection “A Pathway for Best Care: The Reproductive Years” |
Thursday, November 3rd at 6:00 pm - Zoom
This virtual session is free and open to women age 18 and up with inherited bleeding disorders and/or to women whose lives are impacted by a bleeding disorder (i.e. caregivers, spouses, immediate family members). The topic will be "A Pathway for Best Care: The Reproductive Years" In this session, attendees will learn about how to identify the symptoms of a bleeding disorder and how to effectively manage the onset of menorrhagia, family planning and childbirth. Presenter: Dr. Sarah O’Brien, Pediatric Hematologist at Nationwide Children’s Hospital
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Virtual – VHF/HACA Advocacy Stakeholder and Education Meeting |
Wednesday, November 9th at 4:00 pm - Zoom
Join constituents, advocacy committee members, and community stakeholders from throughout Virginia for the VHF/HACA Advocacy Stakeholder and Education Meeting that will cover a wide range of advocacy topics relevant to the bleeding disorders community! Meeting Agenda State Update AND What Can We Expect in 2023 General Assembly
Becky Bowers-Lanier, VHF/HACA Advocacy Consultant and Heidi Dix, Senior Vice President of Policy, Virginia Association of Health Plans Virginia Bleeding Disorder Program (VBDP) Update
Lauren Dunn, Hemophilia Social Worker, VCU Medical Center Federal Update
Miriam Goldstein, J.D, Director of Policy at HFA, Nathan Schaefer, MSW, VP of Public Policy at NHF, and Matt Delaney, Government Relations Specialist at NHF |
Thank you for your support of the Virginia Hemophilia Foundation (VHF). For some popular ways to give back and help us serve the inherited bleeding disorders community in Virginia, go here. If you have other ideas or questions, please contact Kelly Waters, Executive Director, at info@vahemophilia.org. We look forward to working with you!
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