Virginia Hemophilia Foundation

01/31/2026

So excited for the LadyBugs 🐞 Conference with CHES Foundation, Inc. - registration is now open! https://ches.education/ladybugs

12/16/2025

From the recent government funding update to the push for extended ACA tax credits, NBDF’s policy team is tracking key developments that impact the bleeding disorders community.

This month’s highlights include:
• FY26 federal funding updates
• ACA tax credit proposals
• New Medicaid pricing models
• State-level policy and appointments

Stay informed and take action. Your voice helps shape the future of healthcare access.

🔗 Read the full update: https://bit.ly/44rqK3w

12/12/2025

HELP CoPays Action Alert from National Bleeding Disorders Foundation👉 Take action through NBDF’s HELP Copays Act alert — the message is pre-filled, automatically sent to your legislators, and only takes a few minutes: https://bleeding.quorum.us/campaign/150834/

With a potential health care package moving through Congress (details still unfolding), advocacy efforts may ramp up quickly in the new year. Now is the perfect time to take action and show lawmakers that our community is paying attention.

📍 Virginia advocates: Senator Tim Kaine, is a cosponsor of S.864, let him know how much you appreciate his support for people with bleeding disorders and other chronic conditions.

At the same time, we’re working to rebuild momentum in the House and get back to and exceed the 150+ cosponsors we previously had for H.R. 830.

Every message matters. Thank you for speaking up and supporting access to affordable care!

Tell your member of Congress to support the HELP Copays Act! (H.R. 6423/S. 864)

12/11/2025

SAVE THE DATE! Excited to partner with CHES Foundation, Inc. on the 𝗟𝗮𝗱𝘆𝗕𝘂𝗴𝘀 𝗡𝗮𝘁𝗶𝗼𝗻𝗮𝗹 𝗪𝗼𝗺𝗲𝗻'𝘀 𝗖𝗼𝗻𝗳𝗲𝗿𝗲𝗻𝗰𝗲 in Colonial Williamsburg, VA - April 24-26, 2026. More details to come..stay tuned🐞

We're thrilled to announce our 2026 in-person events, continuing our mission to provide meaningful and instructive education for the ultra-rare bleeding disorder community. Mark your calendars and join us for these incredible opportunities to connect, learn, and grow together:

🗓️ 𝗢𝗻𝗲 𝗗𝗿𝗼𝗽: Tampa, FL - February 27-March 1, 2026 (rescheduled from November 2025)
🗓️ 𝗟𝗮𝗱𝘆𝗕𝘂𝗴𝘀 𝗡𝗮𝘁𝗶𝗼𝗻𝗮𝗹 𝗪𝗼𝗺𝗲𝗻'𝘀 𝗖𝗼𝗻𝗳𝗲𝗿𝗲𝗻𝗰𝗲: Colonial Williamsburg, VA - April 24-26, 2026, in partnership with the Virginia Hemophilia Foundation
🗓️ 𝗔𝗳𝘁𝗲𝗿 𝘁𝗵𝗲 𝗦𝗵𝗼𝗰𝗸 𝗜𝗻𝗵𝗶𝗯𝗶𝘁𝗼𝗿 𝗙𝗮𝗺𝗶𝗹𝘆 𝗖𝗮𝗺𝗽: Camp Zeke - June 19-22, 2026
🗓️ 𝗜𝗻𝗵𝗶𝗯𝗶𝘁𝗖𝗼𝗻: New Orleans, LA - September 10-13, 2026 (First day is Leverage in partnership with GutMonkey)
🗓️ 𝗢𝗻𝗲 𝗗𝗿𝗼𝗽 𝟮𝟬𝟮𝟲: Tampa, FL - November 6-8, 2026

As always, CHES is grateful to our funders and community for the support! Please continue to spread the word about CHES. We welcome new individuals and families and remain true to our 3 pillars: Women, Ultra-Rares, and the Inhibitor Community 💪❤️

Stay tuned for more updates on our 2026 events!

12/03/2025

🎉 THANK YOU, VHF COMMUNITY! 🎉Because of your generosity, we not only met our Giving Tuesday goal of $1,350 we surpassed it and raised $1,956! ❤️

If you’d still like to donate, there’s time! Give here: https://vahemophilia.org/get-involved/donate-now/

Thank you for helping us strengthen and support our bleeding disorders community. ❤️🩸

Our Giving Tuesday CAMPaign for Campers Starts Now! 👉 Give today: https://vahemophilia.org/get-involved/donate-now/

This year, we’re raising $1,350 to send two kids to Camp Youngblood, a place where confidence grows, friendships form, and campers learn life-changing skills in a supportive, medically safe environment.

Last summer, your generosity helped bring VainSim infusion training tools to camp, giving campers the chance to practice self-infusion - many for the very first time. The confidence they gained was unforgettable and will stay with them for years. 💪✨

You can help make these moments possible again.
Every gift, large or small, helps create experiences that empower kids and strengthen our community.

👉 Share this post to help us spread the word!

Thank you for being part of our VHF family. ❤️

12/02/2025

Our Giving Tuesday CAMPaign for Campers Starts Now! 👉 Give today: https://vahemophilia.org/get-involved/donate-now/

This year, we’re raising $1,350 to send two kids to Camp Youngblood, a place where confidence grows, friendships form, and campers learn life-changing skills in a supportive, medically safe environment.

Last summer, your generosity helped bring VainSim infusion training tools to camp, giving campers the chance to practice self-infusion - many for the very first time. The confidence they gained was unforgettable and will stay with them for years. 💪✨

You can help make these moments possible again.
Every gift, large or small, helps create experiences that empower kids and strengthen our community.

👉 Share this post to help us spread the word!

Thank you for being part of our VHF family. ❤️

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.

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.

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

09/26/2025

Anemia is the most prevalent hematologic disorder worldwide with iron deficiency as a leading cause. Both are frequently underdiagnosed.

Dr. Mukul Singal shares the symptoms, diagnosis, and significant impact iron deficiency and anemia can have on women. Learn more: https://www.innovativehematology.org/anemia-and-iron-deficiency-in-women-a-global-and-national-health-concern/

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.....