Virginia Hemophilia Foundation

Virginia Hemophilia Foundation Dedicated to serving and supporting the needs of those impacted by a bleeding disorder through educa Inclusion on the VHF page is not an endorsement.

DISCLAIMER
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The Virginia Hemophilia Foundation (VHF) page is provided for general information purposes only. VHF does not engage in the practice of medicine and under no circumstances recommends particular treatment for specific individuals. For diagnosis or consultation on a specific medical problem, VHF recommends you contact your physician or local hemophilia treatment center (HTC). We request that you respect fellow community members and the posting guidelines of Facebook, and refrain from including any of the following in your comments:

• abusive, defamatory, or obscene;
• fraudulent, deceptive or misleading;
• in violation of any intellectual property right of another;
• in violation of any law or regulation, or
• otherwise offensive, graphically or in tone. VHF reserves the right to remove postings that do not respect the above guidelines. A post expresses the views of its author and does not represent the views of the VHF or its staff. VHF is not responsible for the accuracy of information, opinions, claims, or advice shared here by VHF fans or any other individuals or organizations. VHF does not allow companies to solicit products, services or research on the VHF page. References and links to other websites or references to other organizations, products, services, or publications do not constitute endorsement or approval by VHF. VHF is not responsible and assumes no liability for the content of any linked websites. The use of VHF materials from outside organizations – including but not limited to the VHF logo, photographs, images, articles from its newsletter(s) and event fliers – are expressly prohibited without advance written approval (electronic mail and faxes are acceptable) from VHF.

📣 Updated National Bleeding Disorders Foundation NBDF Health Insurance ToolkitSections on Advanced Premium Tax Credits h...
10/31/2025

📣 Updated National Bleeding Disorders Foundation NBDF Health Insurance Toolkit

Sections on Advanced Premium Tax Credits have been removed for now due to current uncertainties. If the credits are extended for 2026, NBDF will share supplemental materials and enrollment updates.

This toolkit still includes info on insurance terms, coverage tips, and worksheets to help guide you through the process.

🧾 Find it on their website here:

Explore NBDF's essential guide for ideal insurance plans for bleeding disorders. Discover costs, network size, and prescription coverage options.

"For years, many in the bleeding disorders community have suspected there’s more to our stories than clotting factor lev...
10/31/2025

"For years, many in the bleeding disorders community have suspected there’s more to our stories than clotting factor levels alone can explain. Easy bruising, joint instability, fatigue, and chronic pain don’t always fit neatly within the framework of a factor deficiency. Increasingly, many of us are discovering that another diagnosis — Ehlers-Danlos syndrome (EDS) — may be part of the picture."

Recognizing the link between bleeding disorders and Ehlers-Danlos syndrome is key to improving care, says columnist Jennifer Lynne.

10/01/2025

In Virginia, you have three ways to vote: by mail, early in-person, or on Election Day. The November General Election is Tuesday, November 4. Register and make a plan to vote at Vote.Virginia.gov.

🍂 Fall Community Event at the Blue Ridge Mountain Maze (at Blue Toad Hard Cider – just 40 mins from Charlottesville!) on...
09/26/2025

🍂 Fall Community Event at the Blue Ridge Mountain Maze (at Blue Toad Hard Cider – just 40 mins from Charlottesville!) on Sat., October 18th at 12:00 PM. Register now and save your spot! https://vahemophilia.org/event-program/roseland-fall-community-event-at-blue-ridge-mountain-maze/

Join VHF for an A-Maze-ing Day of Education and Fall Fun!

🎃Corn Maze + Pumpkin Patch – Find your way through the 5-acre maze and pick your perfect pumpkin.
🎃Farm Fun Zone – Giant slides, mini mazes, farm animals, pony rides, obstacle courses, and more!
🎃VHF Gathering Area – A private spot to relax, recharge, and connect with the community.
🎃Food + Treats – Lunch provided by VHF + cider donuts, kettle corn, and other fall favorites available for purchase.
🎃Community + Connection – Learn, share, and spend time with others in the bleeding disorders community.

Thank you to our sponsors: CSL Behring, Sanofi, and UVA-HTC

Dismissed shares powerful stories of women who refused to be ignored and are changing the future for others with  . If y...
09/19/2025

Dismissed shares powerful stories of women who refused to be ignored and are changing the future for others with . If you have not had a chance to watch yet go here and check it out: https://www.dismissedfilm.com/

Dismissed: A Documentary About Women With Hemophilia Aug 28, 2025 Comments (0) For decades women in the bleeding disorders community have had their voices dismissed. Many of you have shared deeply personal stories about having your concerns overlooked or not taken seriously by healthcare providers.....

09/19/2025

One Drop welcomes individuals and an immediate family member living with all ultra-rare factor deficiencies (including FId, FIId, FVd, FVIId, FXd, FXId & FXIII), and ultra-rare platelet deficiencies (including Glanzmann’s Thrombasthenia and Platelet Disorders.)

Living with a   can make school tricky sometimes - but a 504 plan can help! This article shares 10 great reasons why stu...
09/19/2025

Living with a can make school tricky sometimes - but a 504 plan can help! This article shares 10 great reasons why students with rare diseases should have one, from extra time for assignments to making sure teachers know what to do in an emergency.

📚 Check it out and learn how to make school safer and less stressful while still reaching your goals! Also go here to see VHF's Resources and Guidance for Schools and Healthcare Providers https://vahemophilia.org/community-resources/shareable-resources-for-schools-and-healthcare-providers/

10 reasons parents should consider putting a 504 plan in place

"Updated stroke prevention guidelines released by the ASA in 2024 highlighted several additional risk factors for stroke...
09/17/2025

"Updated stroke prevention guidelines released by the ASA in 2024 highlighted several additional risk factors for stroke that are unique to women, including pregnancy, taking oral contraceptives, or being on hormone replacement therapy. The guidelines are particularly relevant to women with bleeding disorders since many of them take oral contraceptives to control heavy bleeding..."

Women with bleeding disorders face unique stroke risks. Updated guidelines highlight prevention strategies and hormonal treatment considerations.

Take Action! Protect Access to Tax Credits for Marketplace Plans and Federal Bleeding Disorders Programs If you attended...
09/16/2025

Take Action! Protect Access to Tax Credits for Marketplace Plans and Federal Bleeding Disorders Programs

If you attended BDC or our Medical Symposium this past weekend then this will likely sound familiar, but National Bleeding Disorders Foundation NBDF needs you to take action now! There are two active advocacy campaigns – one focused on protecting the federal bleeding disorders programs https://bleeding.quorum.us/campaign/137029/ and a second asking Congress to extend the enhanced advance premium tax credits https://bleeding.quorum.us/campaign/eAPTCs/

Congress is in the process of working through the appropriations process ahead of the September 30 funding deadline. We are calling on Congress to maintain funding for the three federal bleeding disorders programs for 2026. These programs support care, research, and public health monitoring for bleeding disorders; oversee and ensure blood and product safety; and foster innovation and advances in treatment for people with bleeding disorders. Contact your member of Congress and ask them to protect our federal health programs.

The tax credits, originally created under the Affordable Care Act (ACA) to help individuals afford their Marketplace plan premiums, were made more generous and were made available to more people through legislation passed in 2021 and 2022. The enhanced tax credits, however, are slated to expire at the end of 2025 – meaning premiums will soar, making it hard or impossible for many enrollees to maintain their coverage. Please join NBDF (and many allies across the patient advocacy community) and tell Congress to act NOW to extend the tax credits and preserve access to coverage.

Call on Congress to Keep the Health Care Tax Credit

Address

9702 Gayton Road Suite 277
Tuckahoe, VA
23238

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