CHES Foundation, Inc.

06/12/2026

🥵 Wᴏᴡᴇᴇ! Sᴜᴍᴍᴇʀ ɪꜱ ʜᴇʀᴇ ᴀɴᴅ ᴡᴇ ʜᴀᴠᴇ SO MUCH ᴛᴏ ꜱʜᴀʀᴇ! 🎉

🐞LadyBugs sessions from April are up on our YouTube! https://www.youtube.com/ ↩ 🎥
We've been busy with our Hermanas de Sangre sessions, an exclusive VWD peek at a new treatment and opening applications for InhibitCon in New Orleans! https://ches.education/inhibitcon

Heather unpacked the clown 🤡 car with this one, you don't want to miss out on this edition of the Digital Digest! ➡️https://ches.education/newsblog/2026/bdnews6-12-ladybug-youtube-inhibitconnola-hympaz

06/11/2026

⚜️ 𝗡𝗲𝘄 𝗢𝗿𝗹𝗲𝗮𝗻𝘀 𝗶𝘀 𝗰𝗮𝗹𝗹𝗶𝗻𝗴! 𝗕𝗶𝗴 𝗰𝗼𝗻𝘃𝗲𝗿𝘀𝗮𝘁𝗶𝗼𝗻𝘀. 𝗕𝗿𝗲𝗮𝗸𝘁𝗵𝗿𝗼𝘂𝗴𝗵 𝗶𝗻𝘀𝗶𝗴𝗵𝘁𝘀. 𝗦𝘁𝗿𝗼𝗻𝗴𝗲𝗿 𝗰𝗼𝗻𝗻𝗲𝗰𝘁𝗶𝗼𝗻𝘀. 🔌

InhibitCon is the only national conference for adults and families affected by an inhibitor. We're heading to New Orleans on September 10–13, 2026, at the Royal Sonesta on Bourbon Street. Want to Attend? ↪ https://ches.education/inhibitcon

Join healthcare professionals, advocates, patients, caregivers, and industry leaders for an unforgettable experience focused on advancing care, sharing knowledge, and building community. We'll see you there!

06/08/2026

📰 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.

06/05/2026

🩸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.

Females diagnosed with von Willebrand Disease (a bleeding deficienc...

06/03/2026

🦓 **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. 🦓

Dr. Russek, PT, DPT, PhD, OCS (professor emeritus of physical therapy at Clarkson University and Orthopedic Certified Specialist physical therapist) presents...

05/29/2026

📦 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.

05/28/2026

🎧 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.

05/27/2026

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

05/27/2026

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

05/27/2026

Heavy bleeding. Easy bruising. Being told it’s “normal.”

Women with von Willebrand disease are often overlooked or diagnosed late — and many still have questions about treatment options and the future of care.

Join Girls Bleed Too, CHES Foundation, Inc. and HEMAB for an important conversation about emerging approaches to VWD treatment.

📅 June 10, 2026
🕒 8 PM ET
💻 Free Virtual Webinar

🔗 Register at GirlsBleedToo.org