Virginia Bleeding Disorders Foundation VABDF

03/13/2026

BioMarin has announced it will withdraw the gene therapy ROCTAVIAN from the U.S. market, with availability continuing through the end of May.

ROCTAVIAN marked a major milestone as the first approved gene therapy for adults with severe hemophilia A. While access challenges influenced this decision, the research behind it represents decades of progress.

NBDF remains committed to supporting innovation and access for our community.

Learn more: https://bit.ly/4b3mdIo

03/12/2026

From writing a letter to meeting with lawmakers, grassroots advocacy gives our community the tools to protect access, strengthen care, and shape the future of bleeding disorders policy.

You don’t have to be an expert to get started. You just have to take the first step.

🔗 Learn the 6 steps to grassroots advocacy at https://bit.ly/4s9f4f4

03/11/2026

📢📢📢Last‑Minute Spot Available! We had a last‑minute cancellation for our Annual Meeting. If you want to join us, register here https://form.jotform.com/253023843469157 by 5 PM today or email heather@vahemophilia.org.

📅 Dates: March 13–15
📍 Location: Hotel 24 South, Staunton

Join VHF for a weekend of education, connection, and community as we also celebrate Bleeding Disorders Awareness Month. Expect educational sessions, exhibit time, family programming, meals together, and plenty of chances to connect.

Highlights:
• Friday night dinner session on Caregiver Burnout
• Saturday: breakfast, exhibits, educational programs, lunch, childcare/youth activities
• Sunday: educational breakfast + optional outing to the Frontier Culture Museum

Overnight accommodations provided Friday & Saturday
Registration: $25 per household

Thank you to our sponsors: Accredo by Evernorth, Bayer, BioMatrix, Cottrill’s, CSL Behring, Genentech, Hemabiologics, Hemophilia Alliance, InfuCare Rx, Novo Nordisk, Pfizer, Sanofi, Soleo Health, Superior Biologics, Takeda, UVA-HTC, and VCU-HTC.

03/05/2026

Today advocates from Virginia joined over 250 people from across the country for Washington Days! Our advocates are making sure that congress understands that , the importance of federal funding for our HTC’s and the CDC Division of Blood Disorders, and to talk about a new bill called FED UP that will help to remove barriers for women and girls with bleeding disorders.

03/02/2026

Join Us for a Special VWD Awareness Week Virtual Education Session!
“Discover a New Investigational Approach to VWD Treatment”
March 3 AT 7PM (EST)🔗 RSVP https://vahemophilia.org/event-program/virtual-education-session-discover-a-new-investigational-approach-to-vwd-treatment/

Star Therapeutics is currently investigating VGA039, a potential once‑monthly subcutaneous prophylactic treatment for von Willebrand Disease (VWD).

If you or a family member has any type of VWD or if you’re simply interested in learning about emerging therapies in the bleeding disorders community this session is for you!

During the session, you’ll learn about:
🩸How VGA039 works
🩸The clinical development pathway for this investigational therapy
🩸 Early clinical trial results
🩸 The VIVID Clinical Trials and how to explore eligibility

Featured Speaker:
Laura Guido, PharmD, MBA, BCPS
Executive Director, Medical Affairs, Star Therapeutics
Dr. Guido is a clinical pharmacist with experience in hemophilia A gene therapy development, anticoagulation, and clinical pharmacy practice.

03/02/2026

🩸March is Bleeding Disorders Awareness Month🩸

Bleeding disorders affect the body’s ability to form proper blood clots, which can lead to prolonged or spontaneous bleeding. These conditions occur when platelets or one of the 13 clotting factors are missing or not working correctly, resulting in mild, moderate, or severe bleeding symptoms.

For many families, treatment is lifelong and extremely costly. Access to comprehensive care and Hemophilia Treatment Centers (HTCs) helps individuals live long, healthy lives but only when support and resources are available year‑round.

During our annual “Season of Giving,” from March 1 through April 17 (World Hemophilia Day), we invite you to make a one‑time donation or become part of our Hope Society - a dedicated group of monthly donors who sustain programs throughout the year.
Every gift helps and builds hope.

➡️To join, visit our donation page, choose your amount, check “recurring donation,” and complete the form. You can cancel anytime by emailing info@vahemophilia.org. https://vahemophilia.org/get-involved/donate-now/

Learn more about bleeding disorders and how you can get involved this month:
🔗 https://vahemophilia.org/events-and-programs/bleeding-disorders-awareness-month/
🔗 https://vahemophilia.org/about/bleeding-disorders/

Disorders

03/01/2026

🩸March 1: Honoring the Start of Bleeding Disorders Awareness Month & Von Willebrand Disease (VWD) Awareness Day

VWD is the most common inherited bleeding disorder affecting up to 1 in every 100 people - yet many don't know they have it. Symptoms include easy bruising, frequent nosebleeds, prolonged bleeding after cuts or surgery, and heavy menstrual periods. VWD affects men and women equally, but women are often more symptomatic.

Why VWD awareness matters: VWD is often underdiagnosed, raising awareness leads to earlier diagnosis and better care.

Today also marks the beginning of Bleeding Disorders Awareness Month, a national observance that includes all inherited bleeding disorders — from hemophilia to von Willebrand disease (VWD), rare factor deficiencies, and platelet disorders. This month is dedicated to raising awareness, amplifying voices, and supporting the millions affected by these conditions.

Together, let’s use March 1 to kick off a month of education, compassion, and action for everyone living with bleeding disorders - especially those impacted by VWD. To help us make sure more Virginians get the diagnosis and care they need. If you (or someone you care for) are looking for a bleeding disorders risk self-assessment tool take the “Better You Know” survey developed by the National Bleeding Disorders Foundation (NBDF) https://www.betteryouknow.org/

02/28/2026

🦓Today is Rare Disease Day and we want to highlight rare inherited bleeding disorders!

🩸In the US, a rare disease or disorder is defined as one that affects fewer than 200,000 people. This means hemophilia A and B, and the less-common factor deficiencies such as I, II, V, VII, X, XI, XII and XIII, are all rare disorders. Rare factor deficiencies were only identified within the last 60-70 years. Go here to learn more and for educational resources. https://www.bleeding.org/bleeding-disorders-a-z/types/other-factor-deficiencies

🩸Other rare inherited bleeding disorders include platelet function disorders such as Glanzmann thrombasthenia, Bernard‑Soulier syndrome, and Platelet Storage Pool Disease (SPD). https://www.bleeding.org/bleeding-disorders-a-z/types/inherited-platelet-disorders
These conditions may be rare, but every person’s story matters. Today, we honor and support everyone living with a rare inherited bleeding disorder.

02/20/2026

As we continue our countdown to Rare Disease Day on February 28, let’s shine a light on Factor VII (7) Deficiency, the most common of the rare bleeding disorders. Here’s what you need to know:

🔹𝗪𝗵𝗮𝘁 𝗶𝘀 𝗙𝗮𝗰𝘁𝗼𝗿 𝗩𝗜𝗜?: Factor VII (FVII), also known as proconvertin, is a protein crucial for initiating the clotting process. When bound to tissue factor, it triggers the clotting cascade leading to blood clot formation.
🔹𝗛𝗼𝘄 𝗥𝗮𝗿𝗲 𝗜𝘀 𝗜𝘁?: With an incidence of 1 in 300,000-500,000, Factor VII Deficiency is the most prevalent among rare factor deficiencies.
🔹𝗜𝗻𝗵𝗲𝗿𝗶𝘁𝗮𝗻𝗰𝗲: It is inherited in an autosomal recessive manner, affecting men and women equally. Both parents must carry the gene to pass it on.
🔹𝗦𝘆𝗺𝗽𝘁𝗼𝗺𝘀: Severity varies; severe cases can involve joint and muscle bleeds, easy bruising, and bleeding post-surgery. Women may experience severe menorrhagia.
🔹𝗗𝗶𝗮𝗴𝗻𝗼𝘀𝗶𝘀: Determined through aPTT and PT tests, with confirmation via a FVII assay.
🔹𝗧𝗿𝗲𝗮𝘁𝗺𝗲𝗻𝘁 𝗢𝗽𝘁𝗶𝗼𝗻𝘀: Recombinant factor VIIa (rFVIIa) is the primary treatment, with prothrombin complex concentrates and fresh frozen plasma as alternatives.

At CHES, we are committed to providing quality educational programs for those with rare bleeding disorders, like Factor VII deficiency. Our One Drop Ultra Rare Bleeding Disorders Consortium brings together individuals with rare conditions for support and learning. https://ches.education/one-drop

02/20/2026

📅 March 28 | 4–7 PM PST
🔗 Learn more at: https://bit.ly/46wBui2

On March 28, be part of a powerful night of conversation, music, and community during our national NBDF livestream. From expert insight to live performances, this is a moment to connect, reflect, and take action.

📅 March 28 | 4–7 PM PST
🔗 Learn more at: https://bit.ly/46wBui2

02/20/2026

"I've learned that without asking specific questions, information often gets overlooked. By communicating intentionally, I reduce the information burden on my providers. My doctors have learned that when I ask for help, I truly need it."

Walking the fine line of being heard versus ignored.

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. ❤️