Center For Latino Patients With CF

Our mission is to improve the health and quality of life for Latino patients with Cystic Fibrosis through research, education, advocacy, & patient engagement.

[Health Disparities @NIMHD]

📅 October 3 at 2 p.m. ET: Join us for the next NIMHD Director’s Seminar to explore the history and impact of residential segregation on Hispanic and Latino health with Dr. Rudolph Rodriguez from @UWDeptMedicine. https://t.co/ZD7j6CVNMt #NIMHDSeminar #HispanicHeritageMonth

[Evidence-Based Neo @EBNEO]

A cohort study in @PedPulmonol examines racial and ethnic disparities in cystic fibrosis detection in the California newborn screening program https://t.co/PJyD674PMc

#ebneoalerts #equity4babies #EBNEOEquityAlerts #neotwitter #neoEBM

[Center For Latino Patients With CF @LatinoswithCF]

For Hispanic Heritage Month, we celebrate all the Latino/Hispanic people with cystic fibrosis and their families! #HispanicHeritageMonth

[Center For Latino Patients With CF @LatinoswithCF]

Cystic fibrosis gene mutations that are more common in Hispanic or Latino people are not included in many newborn screening programs. This means families are incorrectly told their child does not have CF

[Liz Szabo @LizSzabo]

“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?

https://t.co/PyOCmorJku

[Center For Latino Patients With CF @LatinoswithCF]

Happening tonight! Please join our virtual #cysticfibrosis educational session! https://t.co/5XtNIrvm7q

[Center For Latino Patients With CF @LatinoswithCF]

Los temas incluirán:
-¿Qué causa la FQ y la genética?
-Formas de ser diagnosticado: detección neonatal, síntomas, pruebas genéticas.
-Aspectos únicos de la FQ en individuos Latinos
¡Habrá tiempo para responder y discutir todas sus preguntas! Abierto a todos

[Center For Latino Patients With CF @LatinoswithCF]

¡Venga a aprender más sobre la genética y el diagnóstico de la fibrosis quística (FQ)! @CFRI_CureCF con el Centro de Latinos con Fibrosis Quística invita a individuos Latinos con FQ o padres/cuidadores de niños Latinos con FQ a unirse a una sesión educativa en Español y Inglés

[Center For Latino Patients With CF @LatinoswithCF]

https://t.co/5XtNIrvm7q

[Dr Meghan McGarry @DrMeghanMcGarry]

But most important the medical community needs to treat all people with kindness respect and compassion.

[Dr Meghan McGarry @DrMeghanMcGarry]

We need newborn screening and genetic tests that work in ALL populations. We need to change education and teaching so all medical providers know CF occurs in ALL races and ethnicities

[Center For Latino Patients With CF @LatinoswithCF]

Come visit our table to learn more about @LatinoswithCF at the @CFRI_CureCF Research conference starting tomorrow!

[Cystic Fibrosis Research Institute @CFRI_CureCF]

#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!

https://t.co/kXRAkWF5VW

#cysticfibrosis

[Susanna McColley MD (she/her) @SusannaMcColley]

Grateful to ⁦@CDCgov⁩ ⁦@CF_Foundation⁩ and The Legacy of Angels Foundation for supporting our work to achieve equity in CF diagnosis ⁦@LurieChildrens⁩ ⁦@ManneResearch⁩ ⁦@noaacf⁩ ⁦@DrMeghanMcGarry⁩ https://t.co/nRL3XLjMYm

[Center For Latino Patients With CF @LatinoswithCF]

💥 new research adding new to the knowledge about health disparities in Latino and Hispanic people with CF!

[Dr Meghan McGarry @DrMeghanMcGarry]

📡 New research from @UCSFChildrens in @JournalofCF
Ethnic Differences In Acquiring Staph. aureus in children and young adults with cystic fibrosis.

🔗https://t.co/IVAG8jr3PU

[Center For Latino Patients With CF @LatinoswithCF]

Cystic fibrosis occurs in children of all races and ethnicities around the world

[Center For Latino Patients With CF @LatinoswithCF]

If you are affected by the recent changes @vertex has made, please reach out and talk with your #cysticfibrosis team

[Dr Meghan McGarry @DrMeghanMcGarry]

‘Caught in the middle’: A battle between @vertex and insurers is leaving cystic fibrosis patients with crushing drug costs https://t.co/x2BACrL0Lg via @statnews

[The Bonnell Foundation @RoadmapToCF]

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!

[The Bonnell Foundation @RoadmapToCF]

Please watch and share with the #Hispaniccommunity @LatinoswithCF @Latina @latpress

[ATS PI-TB Assembly @ATS_PITB]

What percent (%) of patients with CF are Hispanic?

If you missed our October PINE 🌲session on CF presented by Dr. Pryor of @DenPulm you can watch it on this link:

https://t.co/4uJS6VrpeI

#cysticfibrosis #disparities #PINE

[Center For Latino Patients With CF @LatinoswithCF]

“It’s racism. It’s medical racism. It’s systemic racism. From the training for doctors to clinical care. The only difference is my child is Latino” #cysticfibrosis #talesofmissednewbornscreening