In light of the IMMEDIATE THREATS created by significant job cuts by the Current Administration at the CDC Blood Division we are addressing WHAT these NEGATIVE impacts include:

loss of the ability to track disease progression, medications surveillance
understanding how people are handling their treatments and utilizing drug therapy
the loss of lab services, in particular specialized inhibitor testing from CDC. This will further complicate health inequities for the inhibitor populations, especially access for those in rural locations.
loss of surveillance of blood safety and blood borne pathogens such as HIV, Hepatitis C, Zika, Ebola. This impacts all blood products, including blood transfusions.

URGENT CALL TO ACTION

1. Educate yourself on the facts- please check your sources to find factual, unbiased information. Remember the impact and fallout has yet to be fully understood and there will always be information that is not released.

2. Consider providing whatever support you can to protect one of our key assets. Use this link to reach out to your representative and this link to find suggested language.

The CHES team remains vigilant in tracking updates and working collaboratively with national partners in providing advocacy and continued support to the bleeding disorder community.

From Heather Case, Director of Advocacy and Outreach

There is A LOT going on in the community so I am starting with the most pressing and urgent update. Less than 2 weeks ago, the CDC's Division of Blood Disorders and Public Health Genomics was effectively shutdown. Reports state that the 2,400 staff people in the division were placed on administrative leave. Two staff members remain, a wholly insufficient number to continue the critical work. Beyond the tragic end to decades long working relationships with the bleeding disorders community, these changes pose an immediate threat to the important work that was being done with and by the CDC. There are profound concerns regarding blood surveillance, safety of the blood supply, and loss of lab testing to name just a few. National organizations in and out of the bleeding disorder community are banding together to raise One Voice to protest these devastating losses. A letter signed by over 90 organizations was sent to the Secretary of Health and Human Services earlier this week. Please educate yourself on the facts and consider providing whatever support you can to protect one of our key assets. You can use this link to reach out to your representative and this link to find suggested language.

April 17th is World Hemophilia Day! This year's focus is "Women and Girls Bleed Too." There are loads of resources on the World Federation of Hemophilia website for promotion of this event. WHF is reportedly also including efforts to ensure a safe blood supply and surveillance into this year's theme. WHD is celebrated around the world. Check out your local chapter to see how it is being recognized near you.

CHES's first in person event of the year, InhibitCon East, took place last weekend in Charlotte, NC! See below for more information on this fantastic event which supports the inhibitor community.

In honor of this year's WHD theme, this edition's video features a women and bleeding disorders. Support and education for the females in the community is central to CHES's mission. To watch Dr. Sidonio present 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.**

Advocacy
March was recognized as Bleeding Disorder Awareness Month was recognized in multiple states via Proclamations. One advocate reached out to CHES to share her success! Jess was able to go to the "Butler County Commissioner's meeting to accept a Proclamation declaring March as Bleeding Disorders Awareness Month, for the second time! After the meeting's formalities, [she] then met with a journalist from the Butler Eagle (the local newspaper) to share some of [her] lived experience as a woman with two bleeding disorders!" Thank you to Jess Butler for your tireless efforts!

Women and Bleeding Disorders
Did you know that on average it takes a female 16 years to get diagnosed with a bleeding disorder?? Here's one woman's story. Spoiler alert- it took significantly longer than 16 years to reach diagnosis!
https://hemophilianewstoday.com/columns/one-womans-long-journey-von-willebrand-disease-diagnosis/

Post partum hemorrhages and VWD
https://www.researchgate.net/publication/390502719_Postpartum_haemorrhage_in_pregnant_carriers_of_haemophilia_and_women_with_von_Willebrand_disease_a_nationwide_inpatient_database_study

Inhibitors
A new therapy is approved for those with hemophilia A or B with or without an inhibitor.
https://pipelinereview.com/qfitlia-approved-as-the-first-therapy-in-the-us-to-treat-hemophilia-a-or-b-with-or-without-inhibitors/

This article explores the rising costs of inhibitor care.
https://www.managedhealthcareexecutive.com/view/costs-of-hemophilia-with-inhibitors-are-high-warranting-better-management

InhibitCon East
CHES hosted our first of two InhibitCon events this past weekend in NC. We are incredibly honored to host a truly rockstar line up of SMEs; Jill Johnsen, MD; Michelle Rice; Tami Singleton, MD; Amy K. Wilson, MSW, LICSW; Gut Monkey; and our two stellar CHES nurses, Kathy Byrne,RN and Brianna O'Neill, RN. We were joined by families and individuals from across the US and spanned the ages from 4 years old to late 70s! Consider joining us in Portland, OR for InhibitCon West in October, registration will open in August.

Mental Health and Bleeding Disorders
This article discusses the possible impact of a SSRI and bleeding disorder in the treatment of bipolar disorder.
https://www.cureus.com/articles/352201-fluoxetine-and-thrombocytopenia-in-bipolar-disorder-unveiling-a-rare-adverse-effect?score_article=true#!/

This article builds the case for more social support.
https://www.hematologyadvisor.com/news/hemophilia-more-support-needed-empower-social-well-being-disease/

Science Corner
Cardiac implications for antithrombotic therapy for those with a bleeding disorder
https://www.researchgate.net/publication/390237224_Management_of_patients_with_congenital_bleeding_disorders_and_cardiac_indications_for_antithrombotic_therapy

This is an article from an ASH publication about a potential biomarker for ITP diagnostic.
https://ashpublications.org/ashclinicalnews/news/8520/mirna-identified-as-potential-itp-diagnostic

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! The next meeting is Tuesday, May 6th at 8:00 PM ET. 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!