From Heather Case, Director of Advocacy and Outreach

Happy 4th of July, y'all!

CHES hosted our 15th annual After the Shock, Inhibitor Family Camp in PA at the end of June. We welcomed 10 inhibitor families from across the country. If you aren't familiar with After the Shock, check it out here and consider joining us next year. A HUGE SHOUT OUT to our Family Pals who provided compassion, care, and lots of fun to all the families at camp this year!

The National Bleeding Disorders Foundation is hosting their annual Bleeding Disorders Conference in Denver, Colorado in mid-August. CHES will be presenting two sessions: Velociraptors and Inhibitors from 4:00-5:00 PM on Friday in the community track and Janet will be on a panel at 9:00 AM on Saturday. We will also have an exhibit booth. If you will be at BDC, please attend our presentations and come visit us in the Exhibit Hall!

The "Big Beautiful Bill" vote is happening while I type this. As always, use this link to reach out to your representative and this link to find suggested language. If you care about bleeding disorders and access to care, you care about the deep negative impacts of this legislation. UPDATE: since writing this, the BBB has unfortunately passed. This is a serious blow not just to our community but to those in this country that need support. The effects will severely impact Medicare, Medicaid and SNAP just to name a few. We will dive into this more in the coming weeks but for now, know that you are not alone. One of the things this community is known for is perseverance. ♥️

There is no highlighted video this week. You can access all of CHES's webinars 24/7 by clicking the YouTube icon at the footer of the CHES website.

Happy 4th of July!

Heather Case
Director of Advocacy and Outreach

**After the Shock Family Inhibitor Camp**
***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.*

We are especially grateful to our Diamond and Legacy sponsor, Novo Nordisk, for their support of ATS. And we'd like to extend a big THANK YOU to all our families, Family Pals, speakers, and Camp Zeke for a wonderful camp!

Advocacy
Re-sharing the awesome Action Advocacy Sheet created by our friends at the Coalition for Hemophilia B!

This is a personal story of the impact of the cuts
https://www.statnews.com/2025/06/18/blood-supply-safety-monitoring-hiv-aids-hepatitis-cdc-fda-cuts/

Women and Bleeding Disorders
Managing menstrual disorders
https://www.pulsetoday.co.uk/clinical-feature/clinical-areas/womens-health-gynaecology-obstetrics/managing-menstrual-disorders-in-young-women-key-points-for-gps/

Medical gaslighting
https://hemophilianewstoday.com/columns/medical-gaslighting-take-toll-women-hemophilia/

Treatment updates
ISTH Guidelines
https://www.hematologyadvisor.com/features/isth-guidelines-hemophilia/

Positive clinical data presented by Hemab Therapeutics at ISTH
https://www.biospace.com/press-releases/hemab-therapeutics-presents-positive-clinical-and-preclinical-data-across-bleeding-disorder-pipeline-at-isth-2025-congress

Novo Nordisk data presented at ISTH
https://www.globenewswire.com/news-release/2025/06/22/3103068/0/en/Novo-Nordisk-A-S-Mim8-prophylaxis-treatment-shown-to-be-well-tolerated-when-switching-from-emicizumab-in-people-with-haemophilia-A-in-new-phase-3-data-presented-at-the-ISTH-2025-Co.html

Pfizer data presented at ISTH for patients with hemophilia and inhibitors
https://www.morningstar.com/news/dow-jones/202506263367/pfizers-hympavzi-hits-key-goals-in-hemophilia-with-inhibitors

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) Notices about acceptances and waitlist went out 7/3- please check your email!

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!