From Christopher Brewer:
Director of Program Development and Social Media Manger

Hi All! Stepping in for Heather this week!

CHES's annual women's event, LadyBugs, was a HUGE success! With over 50 women in attendance, in addition to 20+ speakers and exhibitors the weekend just flew by but so many memories were made! The need for a fully-funded, national meeting clearly shines through. Even though the event has concluded we ask all who had a chance to share time together this past weekend to spread the word. Tell your local industry reps, your specialty pharmacy liaisons and any and all community members that funding from national sponsors is critically important and needed. With NBDF's (formerly NHF) conference next week this kind of impact could really make waves for next year's annual meeting! 👏

This week we are highlighting a collaboration between CHES Foundation and Sanofi to bring Patient Advocacy Voices to the forefront. The full podcast features CHES CEO Janet Brewer sitting down with Sanofi's host Eric Racine and co-host Jane Smith to address the underserved patients and caregivers in the bleeding disorder community. Stay tuned for the release later in August!

The ENTIRE CHES Staff will be in Aurora, CO next week! If you are attending NBDC as well, be sure to stop by our booth #906 to say "hello" to the team, and don't forget to check out these sessions that will be co-facilitated by CHES. We are so grateful for the recognition and privilege to educate at NBDC

8/22 - Inhibitors and Velociraptors Session: 4-5pm
8/23 - Understanding & Managing Inhibitors: Resources, Education, and Support: 9-10:30am

Christopher Brewer
Director of Program Development and Social Media Manger

InhibitCon West
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 excited for our 2nd InhibitCon of 2025! InhibitCon West will take place in Portland, Oregon on October 3-5, 2025. We also be hosting a pre-event Leverage program with GutMonkey on Thursday, October 2nd. Leverage is open to adults 18+ with an inhibitor. Applications are live on the InhibitCon homepage, sign-up NOW!

FEATURE: More about Patient Advocacy Voices
Official post from CHES Foundation on our LinkedIn about the PAV Project

Broadcast Night! September 9, 2025 @ 8pm EST
Sign up Here: Join CHES and Sanofi for a deeper dive into Qfitlia

Women
Finding Purpose: How chronic conditions have helped, not hurt the endeavor for an identity
https://hemophilianewstoday.com/columns/chronic-conditions-helped-not-hurt-finding-purpose/

Ticks, anaplasmosis and bleeding disorders? Are you kidding me?
Ticks already can carry Lyme disease but also anaplasmosis which can lead to bleeding disorders
https://www.pressreader.com/usa/times-herald-record/20250807/281732685555943

vWD
How excess bleeding from a granuloma leads to vWD diagnosis and low FVIII discovery in a pediatric patient
https://www.cureus.com/articles/385958-profuse-bleeding-from-a-pyogenic-granuloma-as-the-first-clue-to-von-willebrand-disease-in-a-pediatric-patient#!/

Plasma Market is Bonkers
The market using plasma in medical and research fields will reach $34.7 BILLION by 2034
https://finance.yahoo.com/news/plasma-derived-medicine-market-reach-140000900.html

Gene Therapy
26 year old male receives first commercial FIX gene therapy at Children's Hospital Michigan in Detroit
https://www.dbusiness.com/daily-news/childrens-hospital-administers-first-commercially-available-gene-therapy-for-hemophilia-b/

Alhemo Now approved for Hem A/B Without Inhibitors
Concizumab prophylaxis significantly reduced ABR compared with no prophylaxis.
https://www.hematologyadvisor.com/news/alhemo-indication-expanded-to-include-hemophilia-a-b-without-inhibitors/

Rurioctocog Alfa Pegol shows promise for untreated Hemophilia A patients
New EHL has low inhibitor incidence rate with high ITI success
https://www.hematologyadvisor.com/news/hemophilia-rurioctocog-alfa-pegol-promise-untreated-patients/

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**

Upcoming CHES Events 2025

CHES at NBDC Aug 20-23!

LadyBugs: August 8-10, Salt Lake City, UT- IN THE BOOKS!

InhibitCon West: October 3-5, Portland, OR- Applications are currently OPEN!

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. We are excited to share education, connections, and community with you!