CHES Community Newsletter!🩸💜👑

Hi All, The CHES team is super excited to welcome many of you to New Orleans next week for our Inhibitor Extravaganza- it's Family Inhibitor Camp, Leverage and InhibitCon all in one! This year the theme is "Build Your Band." It's a nod to the musical traditions of New Orleans AND a cool way to talk about finding the resources, education and glue crew we each need to be able to handle whatever comes our way with self-confidence and competence. We hope to see you there!

I'd like to expand on Chris's column to Be a good human. As Chris said, it costs nothing to be kind. Especially as we have so many transitions. The seasons are changing, kids are returning to school, the upcoming elections, and the autumnal flavors and sights out and about in the world, let's try to focus on kindness. It's free and so worth it.

If we miss you in New Orleans, do consider joining us in Tampa in November for our ultra-rare conference, One Drop. Applications just opened and it is going to be one heck of an experience!

Please continue to stand up for yourselves and each other. There is no way out but through. Together with our glue crew is how we'll make it these days with some measure of grace and humor!

All the best,
Heather

One Drop 2026 in Tampa is fast approaching! Are you affected by an ultra-rare bleeding disorder? This conference is for you! Make sure you're signed up with our communications profile to receive the opening of applications on August 27th! A list of Ultra-Rare conditions can be found at https://ches.education/one-drop

Dr. Vanessa Salinas presented on how to talk with your healthcare provider in a highly popular session of Hermanas de Sangre. The session was recorded and is available on CHES's YouTube channel. Here is the link: https://youtu.be/nq3Fbcf1uy8

Hermanas de Sangre is made possible from a grant from Sanofi. Gracias a Sanofi!

To sign up for Hermanas de Sangre updates please visit:
Hermanas de Sangre Campaign — CHES Foundation | Rare Bleeding Disorders

CHES remains dedicated to offering high quality education and connections with ultra-rares, women and the Inhibitor Community.

Applications open 8-10 weeks prior to the event. Please stay tuned to CHES on Facebook, Instagram and LinkedIn to watch for open dates. Applications will also be linked to this regular Digital Digest as they open.

Travel Fund aka CHES Champions

In 2026, CHES is asking all participants who are financially able to cover the cost of overnight hotel rooms for in-person CHES experiences. 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 of our community members have equitable access to be seen, heard, and supported.

$50= covers the cost of one breakfast meal for one attendee

$150= covers a portion of our educational costs

$250= covers the cost of a child at a hotel event for a day (food and childcare activities)

$500= covers the cost of lodging for one attendee or one family for an event weekend

Tax deductible donations can be made to the CHES Champions fund. CHES Champions helps to cover travel costs for our community members who would be unable to attend events without financial assistance.

Inhibitors
Important factor switching study from ATHN
https://onlinelibrary.wiley.com/doi/10.1111/hae.70228

Factor X Patients
CHES is hosting a webinar specifically for the Factor X community. "Factor Expressions: Art, Emotion & Connection" is facilitated by Bri Beck, LCPC, ATR-BC, and will be at 8:00 PM ET on September 17, 2026. We hope you can join us for this incredible event! Learn more here!

Females
Hematologic care for women
https://www.hematologyadvisor.com/features/hematologic-care-for-women-global-proposals/

By Females for Females
Are you a female aged 19+ with a diagnosed bleeding disorder or seeking diagnosis? If so, please join us for the next BFFF (By Females for Females) webinar! The session will focus on Iron Deficiency Anemia and bleeding disorders and led by Liz Richard, MS RDN LDN CNSC. The webinar will take place on Tuesday, 10/20 at 8PM ET. Sign up to receive BFFF notices here.

Rebalancing Agents
Understanding rebalancing agents
https://consultqd.clevelandclinic.org/understanding-rebalancing-agents

All the Bleeding Options brings these resources together into a single, organized platform. It serves as an access point for specialty pharmacies, treatment options, organizations, and more. https://www.allthebleedingoptions.com/

ISTH Women's Health Hub
The ISTH has launched its new Women's Health Hub, a comprehensive online resource designed to improve awareness, education and access to evidence-based information on bleeding and clotting disorders affecting women and girls. https://www.isthwomenshealth.org/

Acquired Hemophilia A guidance
https://pmc.ncbi.nlm.nih.gov/articles/PMC9112043/

CHES YouTube!
CHES's content of educational videos is growing! Be sure to not miss the CHES YouTube page. Check the videos out here!