Happy Bleeding Disorders Awareness Month! This month we are especially mindful about raising awareness and calling attention to the various bleeding disorders within our community and advocating for equal treatment and access to care for all. I strongly encourage you to check out the events happening in your local community and to consider using your voice as a patient, caregiver, friend, and ally to support the causes and priorities that are near and dear to the bleeding disorder community.

This edition's Digital Digest video is Dr. Sidonio's presentation on Shemophilia. CHES has worked for decades to raise awareness, educate, and connect females affected by bleeding disorders, many of whom have gone under/unrecognized. To watch, click this link. You can gain access to all of CHES's recorded webinars at the footer of the CHES website.
Best,

Heather Case
Director of Advocacy and Outreach

TODAY IS YOUR LAST DAY TO REGISTER FOR INHIBITCON EAST!
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
This article explores the intersection of women's health and bleeding disorders.
https://www.msn.com/en-in/health/other/critical-intersection-of-women-s-health-and-bleeding-disorders/ar-AA1ABtWq

This article demonstrates how bleeding significantly impacts the quality of life for women with bleeding disorders.
https://www.drugtopics.com/view/bleeding-disorders-significantly-impact-quality-of-life-among-women

Von Willebrands
This press release provides information about Hemab's clinical trial for vwd patients.
https://www.prnewswire.com/news-releases/hemab-therapeutics-announces-start-of-velora-pioneer-a-phase-12-clinical-trial-investigating-hmb-002-for-the-treatment-of-von-willebrand-disease-302387425.html

The connection between platelet disfunction and HMB is explored in this article from a WFH journal.
https://onlinelibrary.wiley.com/doi/10.1111/hae.70016?af=R

Pediatric news
The UK approved a product for moderate and severe hemophilia A patients ages 2+.
https://www.gov.uk/government/news/efanesoctocog-alfa-approved-to-prevent-and-treat-bleeding-in-children-and-adults-with-severe-or-moderate-haemophilia-a

NIH Funding
The impact of Trump administration cuts to NIH funding.
https://www.theguardian.com/us-news/2025/feb/23/trump-nih-health-medical-research

Although this article was written nearly two years ago, it provides interesting insights into clinical spending by NIH and industry.
https://jamanetwork.com/journals/jama-health-forum/fullarticle/2807184

Inhibitors
If you are affected by an inhibitor, CHES has multiple events throughout the year to support you! See the text box above for information about InhibitCon East. Registration for After the Shock, CHES's inhibitor family camp, will open before we know it!

Parts two and three of the Hemophilia News Today arcticle, including an interview with Janet.
https://hemophilianewstoday.com/columns/what-its-like-managing-hemophilia-inhibitor-part-2/

Part three
https://hemophilianewstoday.com/columns/what-its-like-managing-hemophilia-inhibitor-part-3/

Young Adult Coalition is now By Females for Females BFFF
The Young Adult Coalition had their 2nd call on March 11th. The Young Adult Coalition is especially interested in engaging young adult women ages 19-25, however, our calls are open to any female or those who identify as a female who are 19 years+. We welcome the experience, knowledge and shared space that this group is fostering from females of all ages! To demonstrate the sisterhood, we changed the name to By Females for Females or BFFF. To learn more and register for future events, contact Heather Case at hcase@ches.education.

Bone Density
A study regarding the frequency of bone health screening at HTC's in the US.
https://onlinelibrary.wiley.com/doi/10.1111/hae.70027?af=R

Melatonin side effects
This article cites possible concerns for the use of melatonin while taking medications to treat a bleeding disorder.
https://www.verywellhealth.com/melatonin-side-effects-11679211

CHES Events 2025 SAVE THE DATE!

InhibitCon East: April 4-6, Charlotte, NC

After the Shock (Family Inhibitor Camp): June 20-23, Lakewood, PA

LadyBugs: August 8-10, Salt Lake City, UT

InhibitCon West: October 3-5, Portland, OR

OneDrop (Ultra-Rare Consortium): November 14-16, Tampa, FL

Applications for 2025 CHES Events open approximately 8 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!