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Research & Data

This section is an attempt to bridge the vast gap between what the U.S. CF community knows about CF in other countries versus what CF is actually like in other countries by providing data and analysis from various sources.

Cystic fibrosis in Latin America—

Improving the awareness

This article analyzes CF prevalence based on live birth incidence. It also discusses the need for consistency in access to services particularly in the regions of Latin America, including critical elements of the comprehensive care model, such as: patient registries, neonatal screening, CF specialty care, and individualized treatment.


Worldwide Rates of Diagnosis and Effective Treatment for Cystic Fibrosis

This article analyzes CF diagnosis estimated prevalence by region of the world and country relative to access to modulator therapy including triple combination therapy (i.e., Trikafta) based on existing patient registries, surveys, population data, and literature reviews.


More Mornings for CF Warriors in Developing Countries: Improving Access to Basic Evidenced Based Care

This slide deck was developed to raise awareness and inform donors of some of the key global CF challenges (10/11/2023) by Mark Tremblay, President of CFV4L with the social media efficacy slides presented by Jacob Vendetti, Founder and President of Live Fearless Foundation. It summarizes the vexing, yet surmountable challenges and key policy suggestions that CF humanitarian aid organizations can do to cost effectively improve CF mortality rates and quality of life.

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