From Heather Case, Director of Advocacy and Outreach

This edition of the Digital Digest is coming out while the CHES team is hosting our 15th annual After the Shock, Inhibitor Family Camp in PA. Which means while you are reading this I am likely slapping away mosquitos and putting on another layer of sunscreen. We are very excited to welcome inhibitor families from across the country and to host our Family Pals as mentors and champions! If you aren't familiar with After the Shock, check it out here and consider joining us next year. Although it is not my first time at a bleeding disorder camp, this will be my first time at ATS and I am SUPER EXCITED to meet new families and learn new camp traditions.

This week I am taking a break from beating the Advocacy drum for just a moment and instead including our standing Advocacy Resources: Use this link to reach out to your representative and this link to find suggested language. Today's video features CHES's Dental Health and Bleeding Disorders educational session. To see the video click here. There is 24/7 access to all of CHES's webinars by clicking the YouTube icon at the footer of the CHES website.

Let's stay engaged, active, and vocal.
You are not alone!

Heather Case

**After the Shock Family Inhibitor Camp - Applications are Open!**
**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.**

Advocacy
This Action Advocacy Sheet was created by our friends at the Coalition for Hemophilia B. Thank you to Kim Phelan for permission to share!

Who is losing out?
https://kffhealthnews.org/news/article/wamu-health-hub-nih-research-grants-canceled-federal-cuts/?utm_campaign=KHN%20-%20Weekly%20Edition&utm_medium=email&_hsenc=p2ANqtz-8imU3eDT4-GkfiqnKMRbYU7chmynIpwzY7kRLPtcG7wjWS7YZhVMsVPYwNPE1Edth1_ydhY392iqv9Q-PXke4jnv9QAg&_hsmi=366619606&utm_content=366619606&utm_source=hs_email

Impact of cuts on rural hospitals
https://www.fiercehealthcare.com/providers/hundreds-rural-hospitals-risk-closure-funding-bills-medicaid-cuts-senate-dems-say?utm_medium=email&utm_source=nl&utm_campaign=HC-NL-FierceHealthcare&oly_enc_id=0239B6733001A2E

This article demonstrates the impact of patient advocacy on access and care issues (you will need a LinkedIn profile to read the entire article)
https://www.linkedin.com/pulse/patient-advocacy-enhances-access-rare-diseases-tom-larmondra-bkl3e

Women and Bleeding Disorders
This article explores how diagnosis delays persist for women.
https://hemophilianewstoday.com/columns/decades-long-diagnosis-delays-women-von-willebrand-disease/

Iron deficiency or anemia are common side effects for those affected with a factor deficiency, particularly for women.
https://www.thecardiologyadvisor.com/news/females-iron-deficiency-significant-condition-under-recognized-treatment/

von Willebrands and fertility treatments
https://kevinmd.com/2025/06/when-bleeding-disorders-meet-ivf-navigating-von-willebrand-disease-in-fertility-treatment.html

Teens and menstruation
https://www.newswise.com/articles/teens-with-heavy-menstruation-don-t-need-to-suffer-in-silence-period

Treatment updates
Hemab Therapeutics is presenting clinical and preclinical data at ISTH
https://www.prnewswire.com/news-releases/hemab-therapeutics-to-present-clinical-and-preclinical-data-from-multiple-bleeding-disorder-programs-at-the-isth-2025-congress-302476748.html

Expanded age range approval for Jivi
https://www.hematologyadvisor.com/news/jivi-approval-expanded-to-younger-patients-with-hemophilia-a/

Other Topics
A cautionary article about mixing certain vitamins
https://www.shefinds.com/collections/vitamin-e-k-bleeding-risk/#slide-1

Dental Care and Hemophilia
https://www.hematologyadvisor.com/news/hemophilia-clotting-factor-guidelines-dental-care-treatment-risk/

By Females for Females BFFF
By Females for Females, BFFF, 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 sign up for BFFF news and events, use this link.

Visite la página de Hermanas de Sangre para obtener más información sobre nuestra iniciativa para promover la autodefensa de aquellos que hablan español

**Hermanas de Sangre Campaign — CHES Foundation | Rare Bleeding Disorders**

CHES Events 2025 SAVE THE DATE!

InhibitCon East: April 4-6, Charlotte, NC - IN THE BOOKS!

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

LadyBugs: August 8-10, Salt Lake City, UT (Open NOW)

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!