Center For Latino Patients With CF
51 posts
@LatinoswithCF
Our mission is to improve the health and quality of life for Latino patients with Cystic Fibrosis through research, education, advocacy, & patient engagement.
“Parents are told, ‘Your child had a normal newborn screen. You are crazy.’ It’s becoming a barrier to care. That’s the opposite of what it was meant to be,” @DrMeghanMcGarry said. Why do so many families have to fight for a diagnosis? nytimes.com/2024/05/29/wel…
#CFRIConference: JULY 28–30! Our 2023 Conference is a hybrid event held in-person (Redwood City, CA) and via live, online interactive platform. Enjoy presentations on #Phage and #mRNA therapies, #StemCellResearch, #CFparent-hood + more! cfri.tiny.us/CFRI-Conferenc… #cysticfibrosis
📡 New research from @UCSFChildrens in @JournalofCF Ethnic Differences In Acquiring Staph. aureus in children and young adults with cystic fibrosis. 🔗tinyurl.com/StaphCF
‘Caught in the middle’: A battle between @vertex and insurers is leaving cystic fibrosis patients with crushing drug costs statnews.com/pharmalot/2023… via @statnews
A new #cysticfibrosis diagnosis is scary enough; imagine if you couldn't get accurate information about the disease in your native language. This is what happened to Cesar & Nora Hernandez, whose 16 y/o son Alex has #CF. Hear more from them in our upcoming #CFMasterClass series!
