CHES Foundation, Inc.

📰 𝗕𝗶𝗴 𝗻𝗲𝘄𝘀 𝗳𝗼𝗿 𝘁𝗵𝗲 𝗵𝗲𝗺𝗼𝗽𝗵𝗶𝗹𝗶𝗮 𝗰𝗼𝗺𝗺𝘂𝗻𝗶𝘁𝘆 🚨

HYMPAVZI is now approved for people with hemophilia A or B ages 12+ with inhibitors, as well as children ages 6–11 with or without inhibitors.

https://www.pfizer.com/news/press-release/press-release-detail/us-fda-approves-pfizers-hympavzi-treatment-two-additional

This milestone also makes HYMPAVZI the first subcutaneous non-factor therapy available for children with hemophilia B ages 6–11.

🩸𝗩𝗪𝗗 𝗮𝗻𝗱 𝗪𝗼𝗺𝗲𝗻! 🐞

Dr. Sarah O'Brien of National Children's Hospital provides some of the tools to help them achieve and advocate for proper diagnosis, care, and treatment. Watch her presentation at LadyBugs in April this year!

People with Von Willebrand disease may need personalized treatment based on the type and severity of their condition. Management can include medications such as Desmopressin, von Willebrand factor replacement therapy, or clot-stabilizing drugs to help control bleeding. Before surgery, dental work, or pregnancy, it's important to have a bleeding-management plan in place and discuss any medications that could increase bleeding risk with a healthcare provider.

Treatment Considerations for von Willebrand Disease (with an emphasis on women) Females diagnosed with von Willebrand Disease (a bleeding deficienc...

🦓 **ℍ𝕪𝕡𝕖𝕣𝕞𝕠𝕓𝕚𝕝𝕖 𝔼𝕙𝕝𝕖𝕣𝕤-𝔻𝕒𝕟𝕝𝕠𝕤 𝕊𝕪𝕟𝕕𝕣𝕠𝕞𝕖 (𝕙𝔼𝔻𝕊)**

Think of connective tissue as the body's glue—it helps support your joints, skin, and organs. In hEDS, that glue is stretchier than it should be. Learn more about hEDS by watching Dr. Russek PT, DPT, PhD, OCS present at LadyBugs in April this year. This is only Part 1 😉 Check out our YouTube for Part 2! ↪ https://lnkd.in/epZ8-biJ

✨ Common signs:
• Very flexible ("double-jointed") joints
• Joint pain, sprains, or dislocations
• Fatigue and muscle soreness
• Easy bruising
• Sometimes digestive issues or dizziness

⚠️ It's more than being flexible. Loose joints can cause pain, instability, and exhaustion because the body has to work harder for support.

💡 There's no cure, but many people manage symptoms with physical therapy, strength training, and joint protection strategies.

❤️ Many people with hEDS look healthy on the outside while dealing with significant symptoms every day.

**TL;DR:** hEDS is a connective tissue condition that can cause extreme flexibility, pain, fatigue, and joint instability. Being bendy is only part of the story. 🦓

Hypermobile Ehlers-Danlos & Bleeding Disorders: What't the Connection? Dr. Russek, PT, DPT, PhD, OCS (professor emeritus of physical therapy at Clarkson University and Orthopedic Certified Specialist physical therapist) presents...

📦 Wᴇ ᴄᴏᴜʟᴅɴ'ᴛ ꜰɪᴛ ᴍᴏʀᴇ ɪɴᴛᴏ ᴛʜɪꜱ issue. Bᴇʟɪᴇᴠᴇ ᴜꜱ, ᴡᴇ ᴛʀɪᴇᴅ! 🤪

We have a guest writer for the intro of this edition of Digital Digest, you may know her... 🧐 as we tackle what exactly "terms and conditions" are and how it relates to patient privacy.

Catch up on this edition and previous posts here ↪ https://ches.education/newsblog/2026/bdnews5-29-navigate-patpriv-vwdweb-hds

Our VWD webinar with Girls Bleed Too and Hemab Therapeutics is coming up on June 10th! If you're looking to learn more about an emerging treatment be sure to find out how to attend in this weeks digest!

Hermanas de Sangre is back! Join CHES and Nelly Miranda for a listening session (Queremos escuchar a la comunidad) to lend your voice to future planning and creating a bridge between HdS and LadyBugs.

🎧 𝗔𝘆ú𝗱𝗮𝗻𝗼𝘀 𝗮 𝗽𝗹𝗮𝗻𝗲𝗮𝗿 𝗹𝗮𝘀 𝗳𝘂𝘁𝘂𝗿𝗮𝘀 𝘀𝗲𝘀𝗶𝗼𝗻𝗲𝘀 𝗽𝗮𝗿𝗮 𝗛𝗲𝗿𝗺𝗮𝗻𝗮𝘀 𝗱𝗲 𝗦𝗮𝗻𝗴𝗿𝗲! 💃

Te invitamos a participar en nuestra siguiente sesión el 9 de Junio a las 8:00pm ET, 7:00pm CT, 5:00pm PT

Página web para registrarse ➡️ https://ches.education/hermanas-de-sangre
Si ya te registraste antes, no necesitas hacerlo otra vez.

Queremos escuchar tus ideas y saber qué temas les gustaría tratar en nuestras próximas sesiones. También podemos platicar un poco sobre nuestro camino viviendo con un desorden de coagulación.

For too long, von Willebrand disease has been described as common — while many people living with VWD have felt overlooked.

My latest Hemophilia News Today column shares why the upcoming Girls Bleed Too webinar, A New Approach to Von Willebrand Disease (VWD) Treatment, feels so important.

People with VWD deserve current information, emerging research, and the chance to ask questions in a space designed with them in mind.

📅 June 10, 2026
💻 Webinar: A New Approach to Von Willebrand Disease (VWD) Treatment
🔗 Read the article and learn more at girlsbleedtoo.org

VWD is the most common inherited bleeding disorder in the world — and one of the least talked about.

More than half of people with VWD say bleeding affects their relationships, their work, and their mood.

The science is finally catching up to that reality.

Join CHES Foundation, Inc. and Girls Bleed Too for A New Approach to Von Willebrand Disease Treatment on June 10, 2026.

Register at girlsbleedtoo.org

👿 𝗜𝗻𝘃𝗮𝘀𝗶𝘃𝗲 𝗜𝗺𝗽𝗮𝗰𝘁 ☄️

For many people living with Von Willebrand disease (VWD), the impact goes far beyond occasional nosebleeds or heavy periods. Bleeding can shape daily decisions, strain relationships, interrupt careers, and quietly wear down emotional well-being.

https://ches.education/vwd-610-webinar ⬅️ Learn more and sign up here for the Zoom Link!

More than half of people with VWD report that the condition affects their personal relationships, their ability to work or attend school consistently, and their overall mood and mental health.

🗣️𝙒𝙚 𝙣𝙚𝙚𝙙 𝙩𝙤 𝙩𝙖𝙡𝙠 𝙢𝙤𝙧𝙚 𝙖𝙗𝙤𝙪𝙩 𝙞𝙩! 🎙️

Join us on June 10, 2026 at 8 PM for a community webinar created for the VWD and bleeding disorders community, families, nonprofits, and healthcare providers. ↪ https://ches.education/vwd-610-webinar

We’ll be discussing a new treatment approach being studied by Hemab Therapeutics called HMB-002 — a simple under-the-skin injection designed to help the body hold onto more von Willebrand factor.

If you or someone you know is living with VWD, or if you’d like to learn more about emerging treatment options, we’d love to have you join the conversation!