From Heather Case, Director of Advocacy and Outreach
Thank you for your generosity! YOU have an impact at CHES and beyond! Donations allow CHES to continue to bring families together for connection, education and support through travel grants, camp activities and increased attendance at CHES events. We are grateful for your dedication to supporting the underserved communities of our larger bleeding disorder community.
We look forward to connecting with you in 2025!
Happy New Year!
Heather Case
Director of Advocacy and Outreach
Community update
Obituary and recognition of a pioneer in hemophilia and a strong advocate for hemophilia camps, Dr. Marion Koerper Blumberg
https://www.legacy.com/us/obituaries/sfgate/name/marion-blumberg-obituary?id=57089290
Newly Approved Treatment for Hemophilia A or B with inhibitors
This article explains Alhemo, a new treatment option from Novo Nordisk for those with hem a or b with an inhibitor
https://www.hematologyadvisor.com/news/alhemo-approved-for-treatment-of-hemophilia-a-or-b-with-inhibitors/
Hemophilia
This article discusses emicizumab and treatment.
https://www.hematologyadvisor.com/news/emicizumab-hemophilia-targeting-pn1-enhance-hemostasis-treatment-risk/
Joint damage and hemophilia
https://www.hematologyadvisor.com/news/hemophilia-affected-joints-survey-highlights-burden-treatment-risk/
Ultra Rare Bleeding Disorders
New findings on blood clotting for Factor XIII.
https://www.uni-bonn.de/en/news/new-findings-on-blood-clotting
Factor XI update
https://www.medscape.com/viewarticle/what-now-factor-xi-inhibitors-af-2024a1000mv3
Bernard-Soulier case study
https://www.cureus.com/articles/237493-persistent-menorrhagia-and-hemorrhagic-ovarian-cyst-in-a-patient-with-bernard-soulier-syndrome-a-case-report?score_article=true#!/
Heavy Menstrual Bleeding
OHSU Awarded Grant to study HMB (yesssssss)
https://news.ohsu.edu/2024/12/12/ohsu-awarded-over-2-million-to-support-research-of-heavy-menstrual-bleeding
Adolescents and HMB
https://www.healio.com/news/hematology-oncology/20241218/data-show-several-gaps-in-care-of-adolescents-with-heavy-menstrual-bleeding
Potential risks for bleeding after hysterectomy
https://hemophilianewstoday.com/columns/lets-talk-about-bleeding-risk-after-hysterectomy/
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!