From Heather Case, Director of Advocacy and Outreach
As a small and mighty nonprofit, we rely on our fierce and loyal supporters to understand the unique and urgent needs of those affected by inhibitors, ultra-rares and women in this space and to provide what they can to ensure that CHES is able to fulfill our mission. With your support, we offer enriching and invaluable education and connection opportunities to the bleeding disorder community. Every dollar makes a difference. Donate & Fundraise — Comprehensive Health Education | Rare Bleeding Disorders.
We are grateful for your unwavering commitment to our cause and look forward to seeing you at CHES events in 2025! THANK YOU and have a safe and happy holiday season!
Heather Case
Director of Advocacy and Outreach
Shared Decision-Making Tool for Treatment
Article about the WHF tool
https://onlinelibrary.wiley.com/doi/10.1111/hae.15133?af=R
WHF tool
https://wfh.org/treatment-and-care/#sdm-tool
Irish Documentary about the Tainted Blood Crisis
https://www.pressreader.com/ireland/irish-independent/20241128/281715505175622
Glanzmann's Thrombasthenia
GT for GT
https://www.curegt.org/wp-content/uploads/2024/12/Human-Gene-Therapy-Optimized-for-the-Platelet-Bleeding-Disorder-Glanzmann-Thrombasthenia.pdf?fbclid=IwY2xjawHOfWZleHRuA2FlbQIxMAABHUflCu1CpONgmidAcFU4YvTIMmcDjoqFXiwl12Vr-4VDsH99KFyw5okYnA_aem_W8Zbi1nrosfhvcTnKSkKRw
Lit review for recombinant activated FVII for GT patients
https://onlinelibrary.wiley.com/doi/10.1111/hae.15130?af=R
GT in a newborn due to Rare Homozygous Missense
https://www.cureus.com/articles/321931-glanzmann-thrombasthenia-in-a-newborn-due-to-a-rare-homozygous-missense-mutation#!/
Platelet Disorders
Diagnosis of platelet disfunction
https://www.drugdiscoverynews.com/playing-tug-of-war-with-platelets-16154
Phase 3 Trial of Immune Thrombocytopenia
https://www.medscape.com/viewarticle/rilzabrutinib-shines-phase-3-trial-tough-treat-immune-2024a1000mlv?form=fpf
Hemophilia
Concizumab update
https://hemophilianewstoday.com/news/concizumab-reduces-bleeding-patients-without-inhibitors/
Accessability of dental care
https://onlinelibrary.wiley.com/doi/10.1111/hae.15124?af=R
Data presented at ASH
Clinical data for VWD patients
https://www.morningstar.com/news/business-wire/20241209479183/star-therapeutics-presents-interim-clinical-data-for-vga039-in-patients-with-von-willebrand-disease-vwd-at-ash-2024
Shorter bleed time data
https://www.cbs42.com/business/press-releases/ein-presswire/765805944/cayugas-poly-p-snp-complex-demonstrates-90-shorter-bleeding-time-and-nearly-60-less-blood-loss-after-severe-injury/
Fitusarin data presented at ASH
https://www.hcplive.com/view/pipe-fitusiran-anti-thrombin-modulation-effective-bleed-control-reduces-infusions-hemophilia
CHES Events 2025 SAVE THE DATE!
InhibitCon #1: April 4-6, Charlotte, NC
After the Shock (Family Inhibitor Camp): June 20-23, Lakewood, PA
LadyBugs: August 8-10, Salt Lake City, UT
InhibitCon #2: 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!
Check out our Library of resources for women with bleeding disorders!
