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.  Happy Fall, y'all!

Best,
Heather Case
Director of Advocacy and Outreach  

Ultra-Rares
If you missed Janet's interview on Bloodstream Media, or you loved it so much you just want to listen again!- you can listen here.  Thank you for highlighting CHES's OneDrop and the ultra-rare community!

In a separate podcast episode, BloodStream Media hosted Joana Baquero, Factor 1 deficiency advocate and patient.  Listen to Joana and Patrick discuss advocacy and education.

This new publication from WHF was completed in collaboration with International Fibrinogen Physician and Patients Association. If you have a Fibrinogen disorder or are looking to deepen your understanding of ultra-rares, this is the read for you!
https://elearning.wfh.org/resource/what-are-fibrinogen-disorders/

Diagnosis and Management of Platelet Disorders
https://www.cureus.com/articles/296223-diagnosis-and-management-of-immune-thrombocytopenia-in-paediatrics-a-comprehensive-review?score_article=true#!/

Language- what you say and how you say matters!
Check out this article about the impact of language, particularly on youth.  
https://hemophilianewstoday.com/columns/how-words-we-use-can-affect-child-hemophilia/

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.) OneDrop is currently full. Applications will automatically be waitlisted. Click here to be added to the OneDrop waitlist!

Hemo-what?  Von what? 
This article emphasizes the importance of emergency preparedness.The second article discusses impact of COVID19 on bleeding episodes for those with hemophilia.
https://hemophilianewstoday.com/columns/should-you-bring-hemophilia-medication-hospital

https://hemophilianewstoday.com/news/covid-19-infection-no-impact-hemophilia-patients-study-finds/

Market Updates
Insights regarding the emerging bleeding disorders market share
https://thirdeyenews.in/news/global-desmopressin-market-size-share-price-trends-forecast-2024-2032-2/45228/

https://www.openpr.com/news/3649566/blood-clotting-factor-market-size-share-key-drivers-trends

Check out our Library of resources for women with bleeding disorders!