CHES Foundation, Inc.

10/08/2026

We stand with New England Hemophilia Association and the other 50 organizations that have urged the CDC to restore the Division of Blood Disorders & Public Health Genomics.

🗓️ This division was effectively dismantled on April 1, 2025, when nearly all its staff were placed on administrative leave as part of the current administration’s Department of Health and Human Services (HHS) restructuring and mass layoffs.

🗓️ April 1, 2025: Nearly all division staff were placed on administrative leave, leaving key programs without staff oversight.

🗓️April 8, 2025: The American Society of Hematology (ASH) and 95 other organizations publicly called for HHS to restore the division.
September 5, 2025: A court filing in litigation brought by states described the cuts as having completely eliminated the division, noting that its Sickle Cell Data Collection Program had been without division staff since April 1

All of this is wrong, we shouldn't have to fight to get back the support we had. But here we are, read the join letter here: https://ow.ly/qK3t50ZMxxi and continue to be vocal! Stand beside these organizations that are standing by you!

We recently joined the American Society of Hematology and more than 50 organizations in urging the CDC to restore the Division of Blood Disorders & Public Health Genomics to full operational capacity.

The Division plays a critical role in supporting surveillance, data collection, laboratory services, and public health programs that benefit people living with hemophilia and other blood disorders. Read our join letter: https://ow.ly/qK3t50ZMxxi

10/03/2026

Wᴇ ᴄʟᴀᴘ 👏 ꜰᴏʀ ᴘʀᴏɢʀᴇꜱꜱ!

https://ches.education/newsblog/2026/bdnews10-2-gtpriority-gtstudy-ironfemale

Exciting breakthroughs are happening in the Glanzmann Thrombasthenia (GT) community! A new Real-World Insights Study is exploring the quality of life and real-world impact of GT on patients around the world. Please consider participating and sharing your experiences—your voice matters and can help shape a better understanding of life with GT. Another major milestone is the new dedicated ICD-10-CM code for Glanzmann thrombasthenia, D69.11, secured through advocacy by NBDF, the Glanzmann's Research Foundation, and the CHES Foundation. This important step will help improve how GT is identified and understood by clinicians, researchers, insurers, and healthcare systems.

There are also opportunities to connect, learn, and support one another. The next By Females for Females (BFFF) webinar will focus on iron deficiency anemia and bleeding disorders, led by Liz Richard, MS RDN LDN CNSC, on Tuesday, October 20 at 8 PM ET. So much is happening in the GT community, and these efforts represent meaningful progress toward greater awareness, better understanding, and improved care for those living with GT. 💙

09/25/2026

A fantastic production being viewed and re-visited by Girls Bleed Too. Followed by interaction with Isabelle and Kim, two of the films featured contributors - join them and GBT for a critical conversation happening in the women's space. 💜♀

On October 8, we're screening Dismissed.

It's a documentary about women and girls with bleeding disorders and what it takes to be believed. If you've ever been told your bleeding was normal and weren't sure it was, you'll recognize a lot of it.

After the film, Isabelle Capsel and Kim Hernandez — two of the women featured in it — join us live for a conversation and open Q&A. You'll be able to ask them anything.

Wednesday, October 8 · 8 PM ET · Free Online
Can't make it live? Register anyway and we'll send you the replay.

Your camera and mic stay off the whole time, so you can watch privately.

Reserve your spot: https://girlsbleedtoo.org/events

09/22/2026

We have had the honor and privilege to be working with GutMonkey since 2015 when the Leverage program was first pioneered for adults affected by an inhibitor. Over ten years later their unwavering support of our programs couldn't be more appreciated 💜 We look forward to the next program together with them and the next InhibitCon!

09/21/2026

🎶 𝙏𝙝𝙚 𝙢𝙪𝙨𝙞𝙘 𝙞𝙨 𝙨𝙩𝙞𝙡𝙡 𝙥𝙡𝙖𝙮𝙞𝙣𝙜 𝙞𝙣 𝙤𝙪𝙧 𝙝𝙚𝙖𝙙𝙨 𝙖 𝙬𝙚𝙚𝙠 𝙡𝙖𝙩𝙚𝙧! 🎷

A weekend filled with everything you could imagine! Amazing speakers, enlightening educational content, engaging activities and the BEST attendees that rock the inhibitor community!

Without our 𝗣𝗹𝗮𝘁𝗶𝗻𝘂𝗺 𝗦𝗽𝗼𝗻𝘀𝗼𝗿 Biologics, this annual national inhibitor conference would not be possible nor exist. We thank them profusely for being the shining light in the inhibitor community!

Diamond Sponsor: Sanofi
Gold Sponsor: Novo Nordisk
Silver Sponsors: Genentech & Pfizer

09/18/2026

𝗜𝗻𝗵𝗶𝗯𝗶𝘁𝗖𝗼𝗻 𝟮𝟬𝟮𝟲 𝘄𝗮𝘀 𝗮 𝘄𝗶𝗹𝗱 𝗿𝗶𝗱𝗲! 🎢 It may be over for this year but it certainly is leaving a lifelong impression on ALL of us! We're swinging our focus now to One Drop in Tampa, November 13-15 for the Ultra-Rare Community!

We have added additional spots to One Drop for adults to bring a caregiver, spouse, significant other or immediate family member. If you have an Ultra-Rare bleeding disorder and haven't signed up yet, get to it! Acceptance phase begins next week!

Find more in this Digital Digest and how to signup for One Drop Here ➡️ https://ches.education/newsblog/2026/bdnews9-18-pillars-onedrop-f7study

09/18/2026

09/15/2026

A medical education session you don't want to miss!

"A Lifetime of Bleeding: Inherited Platelet Disorders in Women.” This important conversation will shine a light on the unique challenges women face with inherited platelet disorders and the importance of recognition, support, and informed care throughout every stage of life. Together, we can help raise awareness and ensure women with bleeding disorders feel seen, heard, and supported.

There's still time to register! Join RUNX1 and FWGBD this Thursday (9/17) at 2:00 PM ET for a special Webinar - A Lifetime of Bleeding: Inherited Platelet Disorders in Women. Learn more and register for this no-cost CME program here: https://us02web.zoom.us/webinar/register/7117841356201/WN_cEzFFndGQ0-Nz43Wg96B5w?blm_aid=0 #/registration

09/05/2026

𝙄𝙨 𝙞𝙩 𝙉'𝘼𝙬𝙡𝙞𝙣𝙨 𝙤𝙧 𝙉'𝙚𝙧𝙡𝙞𝙣𝙨? 𝙒𝙚𝙡𝙡 𝙩𝙝𝙖𝙩'𝙨 𝙬𝙝𝙚𝙧𝙚 𝙬𝙚'𝙧𝙚 𝙝𝙚𝙖𝙙𝙚𝙙 𝙣𝙚𝙭𝙩 𝙬𝙚𝙚𝙠!

September is here and the kids are back in school here in New England. It's always a bit wild to us that other parts of the country are already behind a desk by mid-August!

Catch up on our Digital Digest here ➡️ https://ches.education/newsblog/2026/bdnews9-4-nola-inhathn-fx

Heathers back in the drivers seat expanding on my message in the last Digital Digest. We have a line up ⚾️ in this weeks edition including a key ATHN study relating to inhibitors and a special Factor 10 webinar happening on Sept 17!

09/03/2026

🎨 ꜰXᴘʀᴇꜱꜱɪᴏɴꜱ - ꜰᴏʀ ᴏᴜʀ ᴜʟᴛʀᴀ ʀᴀʀᴇ 🔟 ꜰᴀᴄᴛᴏʀ 10'ꜱ! 𝗧𝘄𝗼 𝗪𝗲𝗲𝗸𝘀 𝗔𝘄𝗮𝘆!

Living with Factor X means carrying one of the rarest bleeding disorders largely without a roadmap, and often, without anyone nearby who truly gets it.

All our upcoming webinars are in one place! ↪ https://ches.education/webinars

Join CHES and Bri Beck, LCPC, ATR-BC, for some creative reflection time, and an open group discussion, we'll explore what it means to live with Factor X not just medically, but emotionally, and the quiet power of being truly understood by someone who has lived it too.