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
Ultra-Rares
The International Fibrinogen Physician and Patients Association in collaboration with World Hemophilia Federation, is hosting a Hereditary Fibrinogen Disorders webinar. If you have a Fibrinogen disorder or are looking to deepen your understanding, this is for you! Register here!
International Plasma Awareness Week
International Plasma Awareness Week IPAW is held each year in the first week of October to raise global awareness about source plasma collection, recognize the valued contributions of donors, and increase understanding about plasma protein therapies and rare diseases.
Research Corner
Check out this article about the abnormal blood clotting and bleeding disorders.
https://www.nursingtimes.net/clinical-archive/haematology/coagulopathies-abnormal-blood-clotting-and-bleeding-disorders-30-09-2024/
This article provides an update on a clinical trial for a gene therapy option for hemophilia B patients.
https://hemophilianewstoday.com/news/hemophilia-gene-therapy-beqvez-reduces-bleeds-phase-3-trial/
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
https://us06web.zoom.us/j/89856439904?pwd=UHDnqgrMpB6wjPefefHsk8nZYv9vwA.1
The next webinar session will be "IEP and 504" presented by Joanna Marin, LCSW and in collaboration with JKG Consulting. Ms. Marin will talk about the importance of advocating and supporting your child in school and how you can utilize these options to care for your child. We hope to see you on Monday, October 28th at 4 PM for this important educational session.
La próxima sesión será "IEP y 504" presentada por Joanna Marin, LCSW y en colaboración con JKG Consulting. Ms. Marin hablará de la importancia de abogar y apoyar a tu nino en la escuela y como se puede utilizar las opciones para guardar a tu niño. Esperamos verlos el lunes 28 de octubre a las 4:00 PM ET. para esta importante sesión educativa.
OneDrop Consortium - November 1-3, Tampa, Florida
One Drop welcomes individuals and an immediate family member living with all ultra-rare factor deficiencies (including FId, FIId, FVd, FVIId, FXd, FXId & FXIII), and ultra-rare platelet deficiencies (including Glanzmann’s Thrombasthenia and Platelet Disorders.)
https://ches.education/one-drop
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!
