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, Janet Brewer, Eric Lowe and I are all at NBDF's BDC conference in Atlanta. If you are there, please be sure to say hello!
This weeks key stories:
Women
Providing women with the resources they need for the healthcare they deserve is central to CHES's mission. We aim to build each other up in the journey to diagnosis and access to appropriate care!
In this edition you can read Amy Bradford (Board) of Believe Limited talk about health care for women over 40, explore an article about Quality of Life for women with bleeding disorders, and watch CHES's Spanish speaking webinar on Sangrado Menstrual Abundante (Heavy Menstrual Bleeding.)
https://medium.com/authority-magazine/amy-board-of-believe-limited-on-how-the-us-health-system-can-improve-medical-care-for-women-over-41bc109d1fac
*note- You may need to create a free account to view the whole article- it is worth the extra effort!
https://www.cureus.com/articles/280350-a-comparative-analysis-of-the-bleeding-profile-and-quality-of-life-among-women-with-hemophilia-genotype-compared-to-other-bleeding-disorders#!/
CHES recently hosted a webinar in Spanish about Heavy Menstrual Bleeding. If you missed it or would like to take another listen, you can find the video here. Thank you to Dr. Fernando Corrales-Medina and Dr. Vanessa Salinas for sharing their time and expertise!
Study Updates
Insights regarding Hemophilia B and Roctavian
https://www.hematologyadvisor.com/news/hemophilia-real-world-use-rix-fp-researchers-document-evidence-treatment/
https://hemophilianewstoday.com/news/roctavian-zeroes-bleeds-prophylaxis-need-7-years/
Pediatrics and Bleeding Disorders
Check out these articles regarding a study for children with severe hemophilia A and a great interview with Dr. Malec about pediatric care and hematology
https://www.hematologyadvisor.com/news/hemophilia-efanesoctocog-alfa-regimen-effective-bleeding-prevention-treatment/
https://www.contemporarypediatrics.com/view/lynn-malec-md-discusses-hemophilia-a-role-of-pediatricians
Other: Benefits of Prophy, Gene Editing, and long-term management of HIV
A random assortment of news you can use.
https://www.hematologyadvisor.com/news/hemophilia-prophylaxis-appears-beneficial-standard-care-treatment-risk/
https://hemophilianewstoday.com/news/new-gene-editing-strategy-safer-more-efficient/
https://www.contemporarypediatrics.com/view/weekly-review-nipocalimab-data-precocious-puberty-treatment
Check out our Library of resources for women with bleeding disorders!
