From Heather Case, Director of Advocacy and Outreach

Greetings,
This intro is a little different than my previous community letters. Honestly, I tried hard to reserve my musings for other audiences but I am upset and need your support. The CHES team has been working diligently behind the scenes to create our annual women's event, LadyBugs. We are thrilled this year to partner with the Utah Hemophilia Foundation and their fearless leader, Jan Western. All this is great so far. Here's where I get frustrated. CHES has had a staggering number of females apply for this critical event. These are women from across the country who may not have a clear diagnsosis, who may be supporting their own children while struggling with their own symptoms, who need and deserve education, engagement, and meaningful content.

The staff made some really hard decisions. It felt unfair and sticky and to be frank, super frustrating to be begging for the same amount of time and attention and funding as the conferences that support families and/or males.

We had to WAITLIST OVER 125 WOMEN. Let this sink in. The tremendous response to LadyBugs speaks directly to an unmet need- females in this community are craving to be SEEN, HEARD, AND CONNECTED.

If you do one thing today, please reach out to your industry rep to talk about the vital importance and impact of CHES's education, connection, and community.
Stepping off my soapbox now. Thank you for reading.

Heather Case
Director of Advocacy and Outreach

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 Gut Monkey on Thursday, October 2nd. Leverage is open to adult males with an inhibitor. Applications will open in August!

Women and Bleeding Disorders
Dysfinobrinogenemia and pregnancy
https://bmcpregnancychildbirth.biomedcentral.com/articles/10.1186/s12884-025-07834-3

Importance of connections for women
https://hemophilianewstoday.com/columns/connection-vital-women-hemophilia-b-community/

Impact of federal funding cuts
Possible tariffs on pharmaceutical imports
https://thehill.com/homenews/administration/5390505-trump-200-percent-tariffs-pharma-imports/?

Medicaid cuts
https://www.axios.com/2025/07/07/medicaid-impacts-tax-bill-delayed?

340B cuts
https://www.specialtypharmacycontinuum.com/Policy/Article/01-25/New-Administrations-Impact-on-340B-Program-TBD/76711

Pharmacy Benefit Managers
https://www.drugchannels.net/2025/07/the-stelara-biosimilar-price-war-how.html

Prescription Drug Affordability Boards (PDABs)
https://www.travisjoseph.com/post/pdab-chicanery-how-drug-affordability-boards-are-undermining-public-engagement

Emergency Preparedness
https://hemophilianewstoday.com/columns/tips-hurricane-preparedness-bleeding-disorder/

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!