The Digital Digest now highlights an educational webinar/video in each edition! This edition features a video dubbed in Spanish about Pain Management, presented by Kim Baumann, BA, MPT and Dr. Georgia E. Panopoulos, PhD, LP. To watch, click the link in the Hermanas de Sangre section below.  You can gain access to all of CHES's recorded webinars at the footer of the CHES website.

Thank you for being a part of the CHES community. Happy reading!

Heather Case
Director of Advocacy and Outreach

Registration for InhibitCon East has opened! 
CHES is the only national non-profit in the bleeding disorder space whose mission continuously offers meaningful, instructive and engaging education for the inhibitor community. Education at InhibitCon offers critical insights into the diagnosis and treatment of those with inhibitors, including the impact on mental health, pain management, and up-to-date advancements in the clinical space. There are three distinct tracks: Caregiver, Adult Men, Teens and Kids Visit https://ches.education/inhibitcon to learn more about InhibitCon. InhibitCon West will take place in Portland, OR, October 2-5 with a one day Leverage component to kick off the weekend. 

Women and Rare Bleeding Disorders
"Women with RBDs face unique risks, including gynecologic bleeding, hemorrhagic ovarian cysts, and complications during pregnancy. These issues can significantly impact their quality of life and employment. This study was conducted to characterize the patterns of bleeding disorders, clinical manifestations, and treatment outcomes in female patients."
https://www.cureus.com/articles/325993-clinical-spectrum-and-treatment-outcomes-of-rare-bleeding-disorders-in-female-patients-a-two-center-experience-in-north-pakistan#!/

In this article, G. Shellye Horowitz reviews new data about the estimated number of women who are undiagnosed. (Go, Shellye, go!)
https://hemophilianewstoday.com/columns/missing-persons-women-girls-hemophilia/

Young Adult Coalition
Bleeding disorders advocate, Shanthi Hegde, has partnered with CHES to host a virtual event for young women, February 13, 8:00 PM ET.
 
Join CHES for My Bloody Valentine, an empowering event for women, girls, nonbinary, and those who identify as female! Let's come together for meaningful conversations surrounding life with a bleeding disorder, education about women who bleed, and a fun remote coloring activity. Connect, learn, and celebrate community in a safe and supportive space. Don't miss out—let's make it an event to remember! https://bit.ly/4aAAr1A

HARP study
Dr. Jill Johnsen and Dr. Shannon Meeks are recruiting for a Hemophilia A Research study for pregnant people and their babies. To find out more, visit https://harpf8.org/join-the-study

Glanzmann Thrombasthenia
This article includes emerging research about GT patients and pregnancy as well as the impact of other associated conditions like iron deficiency anemia.
https://www.nature.com/research-intelligence/glanzmann-thrombasthenia-research

Scholarly articles about VWD and Rare Bleeding Disorders
This is an open source article from the Journal of Thrombosis and Haemostasis which was published on the ISTH site. A deeper dive into the ISTH site offers loads of articles and webinars. I encourage you to explore if you are interested in the science behind bleeding disorders and steps to treatment.
https://www.jthjournal.org/article/S1538-7836(24)00497-5/fulltext

Camp camp camp
CHES offers an inhibitor family camp called After the Shock.  If your family does not have an inhibitor and/or you want to stay local for camp, please contact your local bleeding disorder chapter or HTC to ask about camp. Camp offers countless benefits and connects you to the larger bleeding disorders community.  It's an invaluable way to build experiences and friends for a lifetime!

AI and Bleeding Disorders

The Global Hemophilia Report, a podcast from BloodStream Media and hosted by Patrick James Lynch, features Dr. Donna DiMichele discussing the use of AI in research. Take a listen!
https://pod.link/1606987455?utm_source=global+hemophilia&utm_medium=ads&utm_campaign=social&utm_content=podlink

Factor 8 Deficiency
This article explores FVIII deficiency and other related disorders.
https://www.nature.com/research-intelligence/factor-xiii-deficiency-and-related-disorders

Emergency Preparedness
This article includes useful tips for evacuation steps.
https://hemophilianewstoday.com/columns/lessons-ive-learned-preparing-emergencies-evacuations/

Acquired Factor V Deficiency
https://www.nature.com/research-intelligence/acquired-factor-v-inhibitors-and-coagulation-disorders

Applications for 2025 CHES Events open approximately 8-10 weeks ahead of event date. If you are interested in learning more about CHES's critical in person community educational events in 2025, please visit the CHES Website. Planning for our 2025 events is well underway and we are excited to share education, connections and community with you! 

Check out our Library of resources for women with bleeding disorders!