CHES Foundation, Inc.

03/09/2026

Many people know about Hemophilia A, Hemophilia B, and von Willebrand disease—but dozens of rarer bleeding disorders remain overlooked. From factor deficiencies to platelet disorders like Glanzmann thrombasthenia and Bernard-Soulier syndrome, these communities deserve more attention and support.

Read about Jennifer's experience at One Drop just last weekend and how important it is to provide a space for Ultra-Rare families and individuals. Hemophilia News Today is a fantastic page to follow for information about ALL bleeding disorders!

Columnist Jennifer Lynne recently attended the CHES Foundation's One Drop consortium, a powerful space for those with rare bleeding disorders.

03/07/2026

🎹 Iᴛ'ꜱ ᴛʜᴇ Fɪɴᴀʟ Cᴏᴜɴᴛᴅᴏᴡɴ! 🎶

Well, it's not a countdown. But it is the final edition ☹️ 23 publications later we've had the privilege to bring many different topics and subject matters to life. We had the pleasure to work with a plethora of experts that filled our pages with knowledge, research and support for the three pillars of inhibitors, women and the ultra-rare.

https://issuu.com/ches.education/docs/lfh-2025_digital_ 👈 Final Winter 2025 Edition

It's not over though, LFH will continue on in the abridged version we have come to expect every other Friday in the form of the Digital Digest. We'll continue to provide insight into the weekly news we find most useful to the bleeding disorder community.

03/06/2026

𝙻𝚒𝚏𝚎𝙻𝚒𝚗𝚎𝚜 𝚏𝚘𝚛 𝙷𝚎𝚊𝚕𝚝𝚑 𝙰𝚛𝚝𝚒𝚌𝚕𝚎

We're climbing into the "way-back" machine 🤖 If you're in the Inhibitor community, you may know everything already. But for those who don't know what inhibitors are or the history of how we got from there to here, this article from one of our LifeLines editions is enough to get your feet wet. ➡️ https://ches.education/lfh-blog/2020/4/2/unlocking-the-plasma-portal-2014-feature

Today, we are oversaturated with products for A and B but there used to be only one! The struggles then (before prophylaxis was a thing) were certainly different than now in an age where information and support is readily available. Dive back into the past with this article and think of how far we've come.

Do you remember when we had single choices? If you're a bit of an older veteran in this community, drop a comment below on how far you've come!

03/04/2026

𝓞𝓷𝓮 𝓓𝓻𝓸𝓹 𝟐𝟎𝟐𝟓 (𝓽𝓱𝓮 𝓻𝓮-𝓼𝓬𝓱𝓮𝓭𝓾𝓵𝓮𝓭 𝓮𝓭𝓲𝓽𝓲𝓸𝓷)

Winter storm ❄️ and gov't shutdowns 🛫 didn't stop us this time! What a weekend! Over 100+ Ultra-Rares joined us in Tampa for a weekend of jam packed education and a final night to remember!

It would not have been possible without our Diamond Sponsor 💎 Novo Nordisk who have been avid supporters of our endeavor to lift up the Ultra-Rare community.

If you attended, comment below your favorite part of the weekend!

03/01/2026

🚨 Thank you Hemophilia News Today for posting such an amazing post about One Drop, the ONLY national conference for the Ultra-Rare Community. It has been an amazing weekend and we're not quite done yet! 🩸❤️

02/28/2026

𝗛𝗮𝗽𝗽𝘆 𝗥𝗮𝗿𝗲 𝗗𝗶𝘀𝗲𝗮𝘀𝗲 𝗗𝗮𝘆! 🦓

Today, we honor the strength and resilience of those living with rare bleeding disorders. Rare Disease Day shines a spotlight on the unique challenges faced by our community and the incredible courage displayed every day. Let's join hands to raise awareness, amplify voices, and support ongoing research and advocacy.

What does Rare Disease Day mean to you? Share your stories, spread the word, and let's stand united in our mission to bring hope and healing 💪💜

02/27/2026

Embarking on a unique journey with a bleeding disorder can feel daunting, but remember, you are never alone. At CHES, we stand proudly by your side, offering unwavering support every step of the way.

Our community thrives on the strength we find in one another, where every connection and shared experience brings us closer together. Whether you're a patient or a caregiver, your journey is supported by a network that cares deeply and shares profoundly.

How has CHES helped you find strength and resilience on your journey? Share your stories in the comments below, and let's continue to inspire each other with the power of community and unity 💜✨

02/24/2026

Did you know that Bernard-Soulier syndrome is a rare inherited blood clotting disorder characterized by unusually large, giant platelet cells? 🤯It's true!

🩸 This ultra-rare condition leads to prolonged bleeding time, excessive bleeding, and spontaneous ecchymoses. Due to its rarity, BSS might not be the first condition clinicians consider, and diagnosis often requires a high level of suspicion and family history assessment.

🔍 General coagulation studies may not be helpful, and the paucity of data can obscure the diagnosis. However, recognizing BSS is crucial for proper management and family screening.

At CHES, we are committed to providing quality educational programs for those with ultra-rare factor/platelet disorders, like Bernard-Soulier syndrome. Our One Drop Ultra Rare Bleeding Disorders Consortium brings together individuals with rare conditions for support and learning.

📅 We can't wait to see everyone at One Drop in Tampa this week and again in November! Will you be there? Let us know in the comments👇

Data source: NIH, https://bit.ly/4aqMK0r

02/23/2026

The countdown for [rescheduled] One Drop 2025 is ON! ⏰

We’re so excited to see everyone in Tampa this week! As we get closer to Friday, you may have some day-of questions. Swipe through our carousel for some of our more popular FAQs, and check out the One Drop website for the full list, as well as the event agenda: https://ches.education/one-drop

A BIG thank you and appreciation goes out to our legacy Platinum Sponsor, Novo Nordisk, for their continued support of One Drop, the F7 Retreat, and GT Symposia over the years. We also extend our gratitude to our Silver Sponsor,

Let’s make this an unforgettable weekend of learning, networking, and community building. See you there! 🙌

02/21/2026

Powerful 🔋 edition! Heather dives into the importance of support in this community and how little bits come together to make something big. Education and connections within all of our chronic conditions must remain a constant in all of our lives. Plus, get we're EXCITED for our One Drop conference in Tampa, FINALLY happening NEXT WEEK, Feb 27-Mar 1!

Get caught up in the latest Digital Digest! 👉 https://ches.education/newsblog/2026/bdnews2-20-champions-lbdeadline-grandma

02/20/2026

Happy National Caregivers Day! 💜 As we honor the incredible caregivers in our community, we're sharing our top tips to help you navigate your journey with strength and resilience:

1️⃣𝗨𝘁𝗶𝗹𝗶𝘇𝗲 𝗥𝗲𝘀𝗼𝘂𝗿𝗰𝗲𝘀: Take advantage of the resources available to support you and your loved ones. Explore the CHES website, where you’ll find our Lifelines for Health archive, the Lifelines for Health Digital Digest, articles, videos, and more: https://ches.education

2️⃣𝗣𝗿𝗶𝗼𝗿𝗶𝘁𝗶𝘇𝗲 𝗦𝗲𝗹𝗳-𝗖𝗮𝗿𝗲: Remember, caring for yourself is just as important as caring for others. Make time for rest, relaxation, and activities that rejuvenate your spirit, like unwinding with a good book or an afternoon walk.

3️⃣𝗕𝘂𝗶𝗹𝗱 𝗮 𝗦𝘂𝗽𝗽𝗼𝗿𝘁 𝗡𝗲𝘁𝘄𝗼𝗿𝗸: Connect with other caregivers or join a support group to share experiences and gain valuable insights. CHES can be a great place to find community and support through both in-person and virtual events. Remember, you are not alone on this journey!

4️⃣𝗦𝗲𝘁 𝗥𝗲𝗮𝗹𝗶𝘀𝘁𝗶𝗰 𝗚𝗼𝗮𝗹𝘀: Establish achievable goals that allow you to focus on what truly matters without overwhelming yourself. Celebrate small victories along the way.

5️⃣𝗣𝗿𝗮𝗰𝘁𝗶𝗰𝗲 𝗦𝘁𝗿𝗲𝘀𝘀 𝗠𝗮𝗻𝗮𝗴𝗲𝗺𝗲𝗻𝘁: Incorporate stress-reducing techniques, such as mindfulness or meditation, into your routine to maintain emotional balance.

6️⃣𝗦𝘁𝗮𝘆 𝗜𝗻𝗳𝗼𝗿𝗺𝗲𝗱: Keep up-to-date with the latest developments in healthcare and treatment options related to your loved one's condition. Subscribe to our online mailing list and receive the latest updates directly to your inbox: https://ches.education/communications-profile-form

02/20/2026

‼️ Important Aꜱꜱɪꜱᴛᴀɴᴄᴇ Nᴇᴇᴅᴇᴅ 👇

For this year CHES is asking all participants who are financially able to cover the cost of overnight hotel rooms for in person CHES experiences. As the funding landscape continues to change there are significant reductions of support for all. The CHES community is no exception to this reality.

Read more about this situation in our news blog press release here ➡️ https://ches.education/newsblog/2-19-ches-changes-support-needed

We know based on years of feedback that people would like to contribute to further CHES’s vision. CHES Champions is set up for donations of any size. With a little love, we can ensure that all our community members have equitable access to be seen, heard, and supported.