From Heather Case, Director of Advocacy and Outreach

I've been looking for signs of Spring where I live north of Boston, Massachusetts. Budding flowers, birds, and warmer temps are all making appearances. This is my attempt to balance out what has been a steady drip of truly terrifying cuts to the Health and Human Services (HHS) budgets which the impact is still unknown. My suggestion is take yourself outside and move around, get some vitamin D, AND keep fighting. We need the entire community to advocate. Together with one voice we will hopefully stem the tide and get to a place where we can feel hope.

Sign On Here ➡️ Join the Fight with Just a Signature!

On May 5th, NY and 19 other states filed suit against HHS Secretary Kennedy. There are 5 claims in the suit. This article outlines the claims and this is a copy of the lawsuit.

The call to action for the community remains clear: educate yourself on the facts and consider speaking up to protect key assets including the safety of the blood supply, blood surveillance, and inhibitor testing. You can use this link to reach out to your representative and this link to find suggested language.

CHES continues to work closely with other national thought leaders to connect with congressional champions to present one united voice. Please reach out as needed to each other and to the CHES community. CHES and other national organizations in the bleeding disorders space have sent a letter to HHS Secretary Robert Kennedy to request a meeting. We will keep you updated as advocacy efforts continue.

This edition's video features CHES's Self-Infusion Skills in Spanish. This is a translated version of our stellar CHES nurses, Kathy Byrne and Brianna O'Neill presenting. To see the video click here. As always, 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
Director of Advocacy and Outreach

**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.**

Impact of cuts to research and funding
This article explains how direct and indirect costs support research and outlines the potential impact of cuts to research.
https://www.pbs.org/newshour/health/how-possible-nih-cuts-could-threaten-future-treatment-for-neurological-diseases

In addition to the cuts which were already made to HHS, there is potential for cuts to federal and state funding of Medicare and Medicaid. This post from the Hemophilia Alliance explains more.

Women and Bleeding Disorders
Looking beyond the "carrier" status to x-linked diseases
https://hemophilianewstoday.com/columns/uniting-women-x-linked-disorders-prompt-change/

This article explores underrecognized iron deficiency in women with bleeding disorders.
https://www.hematologyadvisor.com/news/females-iron-deficiency-significant-condition-under-recognized-treatment/

Hematomas
https://hemophilianewstoday.com/columns/hematomas-happen-everyday-bleeding-hemophilia/

Gene Therapy
ISTH, WFH and EAHAD issued a joint call to action about the importance of continued support for gene therapy.
https://www.isth.org/news/news.asp?id=699516&_zs=RvVUg1&_zl=qhcCA

One patient's experience receiving gene therapy
https://news.harvard.edu/gazette/story/2025/04/stopping-the-bleeding/

Other topics
An article about DDAVP from ASH
https://ashpublications.org/blood/article/145/16/1814/535276/DDAVP-response-and-its-determinants-in-bleeding

A critical advocacy organization, Danny's Dose, celebrates 10 years
https://www.dannysdose.org/

Mild hemophilia in men
https://hemophilianewstoday.com/columns/men-mild-hemophilia-struggle-access-care/

A large donation of clotting factor to WFH by Sobi and Sanofi
https://hemophilianewstoday.com/news/sobi-sanofis-make-donation-clotting-factor-wfh-aid-program/

The Boston Globe is hosting a Health Equity Summit on Wednesday, 5/14. Virtual attendance is FREE. See the agenda, speakers and registration guidelines by clicking the link below.
https://healthequitysummit25.splashthat.com/?toid=11864153&p=23882ea03f32517a049238d7a7b008a543ac64d64445deef2990a48172f18ba03786af9e&guest-access-hash=NDU5MTgwMDA5fDgwMDMwMTgwNHwxNzQ2NjI4MTg1OzE3NDhjMDMxZDJkMTc4MzM5ZGRhN2RiYjdjODNhYjJjZGZiMmJkYjc1NDQ0ZjkwODVhZmVmZDIyYzIzMDM2YzI%3D

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

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!