From Heather Case, Director of Advocacy and Outreach
It is 2025 and CHES is ready to welcome a new year!
We look forward to hosting multiple in person events across the country and partnering with the Utah Hemophilia Foundation to run LadyBugs in Salt Lake City!
As always, we continue to invest in education, support and community, especially for and with ultra-rares, inhibitors and women. Please check out a new section in the Digital Digest which highlights an educational webinar/video! This edition features a video in Spanish about Heavy Menstrual Bleeding, presented by Dr. Corrales-Medina and Dr. Salinas. To watch, click the link in the Hermanas de Sangre section below. You can gain access to all of CHES's recorded webinars at the footer of the CHES website.
If there are articles or topics you would like to request for Digital Digest - or you just want to say hello! - please be in touch at hcase@ches.education.
Thank you and Happy 2025!
Heather Case
Director of Advocacy and Outreach
Community update
Many of our families and colleagues in the LA and surrounding areas have been affected by the tragic wildfires. Please consider offering support directly to the active GoFundMe pages on Facebook or donating to an organization providing support on the ground.
Gender Equity in hemophilia care
This article discusses efforts to find gender equity in care at HTCs
https://www.hematologyadvisor.com/features/gender-equity-in-hemophilia/
This article addresses the estimated number of undiagnosed women and the work still to be done
https://hemophilianewstoday.com/columns/missing-persons-women-girls-hemophilia/
Gene Therapy for Hemophilia B
These articles offer background on two hemophilia B patients who have received gene therapy treatments
https://www.newswise.com/articles/uc-san-diego-health-first-to-offer-novel-gene-therapy-for-hemophilia-b
https://www.nebraskamed.com/health/patient-stories/benign-blood-disorders/nebraska-medicine-administers-novel-gene-therapy-to
Von Willebrands
This article discusses a possible emerging subcataneous treatment for VWD
https://www.businesswire.com/news/home/20250106373894/en/Star-Therapeutics-Receives-FDA-Fast-Track-Designation-for-VGA039-in-Von-Willebrand-Disease-VWD
Another article about advancements in VWD treatments
https://www.labiotech.eu/trends-news/von-willebrand-disease-treatment-advancements/
Information about a study for those with VWD
https://ctv.veeva.com/study/a-study-assessing-hmb-002-in-participants-with-von-willebrand-disease
AFD
Possible new drug for those with AFD (acquired fibrinogen deficiency)
http://https://pharmaphorum.com/news/grifols-files-drug-rare-bleeding-disorder-us
Taking on Pharmacy Benefit Managers (PBMs)
Mark Cuban starts a company to combat inflated pricing models
https://fortune.com/well/article/mark-cuban-cost-plus-drugs-specialty-pharmacy-prices-brainstorm-tech-2025/
HIV Updates
This article shares updates to HIV medications
https://www.infectiousdiseaseadvisor.com/cch/hiv-protease-inhibitors-drug-interactions-darunavir-cobicistat-emtricitabine-tenofovir-alafenamide/
Hemophilia
This article explains a study of the impact of saliva production on ABR
https://www.hematologyadvisor.com/news/hemophilia-blood-clotting-mechanism-saliva-reduced-bleeding-treatment-risk/
This link discusses a study that measures impact of HTC and Quality of Life
https://www.pharmacytimes.com/view/bleeding-disorder-management-at-a-health-system-specialty-pharmacy-improves-quality-of-life
Applications for 2025 CHES Events open approximately 8-10 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!