From Heather Case, Director of Advocacy and Outreach
Lifelines for Health Digital Digest is an opportunity to share the latest updates for the bleeding disorder community. The articles selected align with CHES's mission: We inspire self-awareness and self-reliance in individuals with chronic health conditions, their families, and their communities. We empower them to engage with their treatment, to live life to its fullest, and, in turn, to inspire others.
We hope you use this newsletter to share critical links, increase awareness about all bleeding disorders, and increase education.
This week is International Plasma Awareness Week. Be sure to read the article below about the advancements in plasma donations and how to participate and celebrate this event.
Best,
Heather Case
Director of Advocacy and Outreach
Inhibitors
An article about blood advancements from ASH
Thrombosis and novel hemophilia therapies: the fine line between clotting and bleeding | Blood Advances | American Society of Hematology (ashpublications.org)
Nonfactor therapies for bleeding disorders
https://onlinelibrary.wiley.com/doi/10.1002/jha2.442
Fitusiran prophylaxis in people with hemophilia A or B who switched from prior BPA/CFC prophylaxis
https://ashpublications.org/blood/article/143/22/2256/515220/Fitusiran-prophylaxis-in-people-with-hemophilia-A
One patient's experience at CHES's InhibitCon
https://ches.education/new-blog/2024/11/5/inhibitcon-helping-with-solutions
Concizumab as a Subcutaneous Prophylactic Treatment Option for Patients with Hemophilia A or B
https://www.dovepress.com/concizumab-as-a-subcutaneous-prophylactic-treatment-option-for-patient-peer-reviewed-fulltext-article-JBM
Long-term efficacy and safety of subcutaneous concizumab prophylaxis in hemophilia A and hemophilia A/B with inhibitors.
https://ashpublications.org/bloodadvances/article/6/11/3422/484399/Long-term-efficacy-and-safety-of-subcutaneous
Upcoming 2024 CHES Events
In person CHES events are currently full. If you are interested in learning more about these critical in person community educational events, please visit the CHES website. To register for the upcoming Hermanas de Sangre webinar in Spanish, please use the link below.
Hermanas de Sangre
Join CHES for the Hermanas de Sangre video premiere! The video features 8 Spanish
speaking women affected by bleeding disorders and is a mix of patients, caregivers,
moms, and advocates, all with a different diagnosis. The purpose is to create support,
education and connection to the Hermanas de Sangre community. No estamos sola.
For more information about Hermanas de Sangre and to get involved, visit Hermanas
de Sangre Campaign — Comprehensive Health Education
This project is made possible with the support of a Sanofi Health Accelerator Award.
¡Únete a CHES para el estreno del vídeo Hermanas de Sangre! El video
presenta a 8 mujeres de habla hispana afectadas por trastornos hemorrágicos y es una combinación de pacientes, cuidadoras, madres y abogadas, todas con un diagnóstico diferente. El propósito es crear apoyo, educación y conexión con
la comunidad de Hermanas de Sangre. No estamos solas.
Para obtener más información sobre Hermanas de Sangre y participar, visita la
Campaña Hermanas de Sangre - Educación Sanitaria Integral
Este proyecto es posible gracias al apoyo de Sanofi Health Accelerator Award.
LadyBugs- November 15-17, Wilmington, North Carolina
CHES is hosting this year's LadyBugs event in partnership with the Bleeding Disorders Foundation of North Carolina. The LadyBugs program empowers women ages 16+ with SHEmophilia who are diagnosed with a clotting factor/platelet deficiency, care for someone, or carry any other bleeding disorder. The program’s goal is to assist women to find their voice when it comes to decision making about the health of themselves and their loved ones.
https://ches.education/ladybugs
Check out our Library of resources for women with bleeding disorders!
