Virginia Hemophilia Foundation | VHF September 2023 Monthly Update |
2023 Bleeding Disorders Conference (BDC) Wrap-Up |
Paxton Mills, VHF Community Member, Volunteer and NBDF NYLI Member
From August 17-19, the bleeding disorders community came together to reconnect and celebrate the National Hemophilia Foundation's (NHF's) 75th anniversary in National Harbor, Maryland for their annual Bleeding Disorders Conference (BDC). At this event, NHF formally announced their rebrand, complete with a new organizational title and logo, to the National Bleeding Disorders Foundation (NBDF). This rebrand comes amidst concerted efforts by NBDF to foster a more inclusive national community for all inherited bleeding and blood disorders go here to learn more about the rebrand.
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Congratulations to Social Worker of the Year - Lauren Dunn, MSW |
Each year, the National Bleeding Disorders Foundation (NBDF) honors those who have made significant contributions to the bleeding disorders community at its Awards of Excellence program at the conclusion of their annual Bleeding Disorders Conference (BDC). Honorees are nominated by their peers for their outstanding dedication and service to the community. This year we were thrilled to learn that, Lauren Dunn, MSW of the Central Virginia Center for Coagulation Disorders (VCU-HTC) was awarded Social Worker of the Year!
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VHF Resources for Schools and Healthcare Providers: Download And Share! |
Be sure you are prepared for the new school year - check out VHF’s webpage with Shareable Resources for Schools and Healthcare Providers. Here you will find handouts for school healthcare providers, teachers, and families that you can download and print, as well as bleeding disorder resources specific to school settings and info on 504 plans. And remember to reach out to your treatment center to enlist their support in communicating with your school.
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Mental Health America (MHA) Back To School Toolkit |
The 2023 MHA Back-to-School toolkit focuses on an area that MHA has seen be a key driver of youth mental health concerns: social media and online activity. The toolkit, "Selfies, Social, & Screens: Navigating Virtual Spaces for Youth," provides educational information and tips on how to tackle some of the most common online stressors for youth, like body image, misinformation, and cyberbullying. |
New! Hemophilia Federation of America (HFA) Menstruation Tracking Toolkit |
HFA has launched a NEW toolkit, designed by Blood Sisters for Blood Sisters and menstruators. The Menstruation Tracking Toolkit features valuable information and updated tracking tools and logs. Logs are available digitally or by print, come in PBAC or by volume loss options, and include daily, weekly, monthly and annual options. |
VBDP Overcoming Distance or Travel Barriers Committee: Telehealth and Technology Resources |
During the Summer of 2021, VHF assisted the Virginia Bleeding Disorders Program (VBDP) in conducting a comprehensive evaluation of VBDP and to identify the unmet needs of the community. Go here to read the full report. One of the main themes to come from the evaluation was that distance to care or travel to HTCs was seen as a barrier to care.
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HFA Word From Washington: August 2023 |
Advocates are responding to yet another payer-side, cost-saving scheme that harms patient access to medicine. The latest version, the so-called “alternative funding program” (AFP), is a shady strategy pitched to employers that promises to lower health plan spending on specialty drugs such as bleeding disorder products and other expensive medicines.
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Now Live: World Federation Of Hemophilia (WFH) Shared Decision Making Toolkit |
The WFH Shared Decision Making Tool for hemophilia treatment provides a framework to guide PWH through the thought process regarding treatment goals and preferences, provides evidence-based and balanced education on expected outcomes by treatment class, and helps PWH navigate the complexities of current treatment options. |
September Is National Preparedness Month |
National Preparedness Month (NPM) is an observance each September to raise awareness about the importance of preparing for disasters and emergencies that could happen at any time. The 2023 National Preparedness Month theme is “Take Control in 1, 2, 3”. Persons with (or caring for someone with) a bleeding disorder should take proactive steps to be ready for all sorts of circumstances. Below are tools and resources from our website and from national organizations intended to help you plan ahead.
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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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