To quote Van Morrison, "Gotta get through January. Gotta get through February." Congrats on making it through! Although we made it to here, it has been abundantly clear to me that many of us are Not Okay. Concerns around Mental Health are mounting. If you are in need of support, help, a shoulder to cry on, a collective barbaric yawp, please reach out to the social worker at your HTC, a close friend, or a mental health professional. To find resources in your area, check out, NAMI | National Alliance on Mental Illness.

On that note, this edition's Digital Digest video is related to Mental Health and is called Eat Yourself Healthy. Presented by Tina Willis, a dietician at the Indiana Hemophilia & Thrombosis Treatment Center, this video discusses a wide spectrum of healthy eating habits. 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

Registration for InhibitCon East closes March 14th!
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.

Voluntary Recall
Please read the link below for details on a voluntary recall of specific lots of Altuviiio.
https://www.bleeding.org/news/medical-advisory-430-regarding-recall-of-lot-ey0330-of-altuviiio-antihemophilic-factor-recombinant-fc-vwf-xten

Women
This article shares insights on post-partum hemorrhages.
https://bmcpregnancychildbirth.biomedcentral.com/articles/10.1186/s12884-025-07281-0

Gene Therapy
The importance of psychosocial support during Gene Therapy treatment.
https://onlinelibrary.wiley.com/doi/10.1111/hae.70005?af=R

This article discusses Gene Therapy and Hemophilia B.
https://hemophilianewstoday.com/news/hemophilia-b-bleeding-rates-remain-low-4-years-hemgenix-treatment/

Read here about Pfizer's decision to end the development of their Gene Therapy drug for Hemophilia B.
https://www.cgtlive.com/view/pfizer-jettisons-fda-approved-hemophilia-b-gene-therapy-beqvez

Inhibitors
This article shares insights about measuring inhibitors.
https://onlinelibrary.wiley.com/doi/10.1111/hae.70007?af=R

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!

To learn more about Hemabio's phase 3 clinical trial for inhibitor patients, visit
https://hemabio.com/clinical-trials/

Read here about one community member's experience with education at CHES.
https://hemophilianewstoday.com/columns/what-its-like-managing-hemophilia-inhibitor-part-1/

Young Adult Coalition
The next meeting of the Young Adult Coalition will be March 11, 2025 at 8:00 PM ET. If you are a female or identify as a female and are 19 years +, please join us for a facilitated conversation about all things bleeding disorders related. In the upcoming session, we will be playing a Bleeding Disorders March Madness game! Register here.

Health Disparities
Dr. Biree Andemariam, Director of the Connecticut Bleeding Disorders Center at UCONN Health, spoke at the Inaugural World Congress on Racial and Ethnic Health Disparities. https://today.uconn.edu/2025/02/the-inaugural-world-congress-on-racial-and-ethnic-health-disparities/#

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!