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HEAC
Symposium

S04--CF Around the World: Challenges & Opportunities

Thursday, September 26, 2024
2:30 PM – 4:30 PM ET
Location:205 A-C

Recorded Session

Cystic Fibrosis care has improved significantly in the US with the introduction of the highly effective modulator therapy. During this session, we aim to explore unique aspects of CF genetics, and clinical care around the world and challenges and opportunities for international collaboration.

Learning Objectives:

  • Discuss CFTR mutation distribution around the world and implications on CF diagnosis and modulator eligibility.
  • Explain differences and similarities between existing CF registries around the world, potential data sharing, and challenges and opportunities for future collaboration between registries.
  • Review collaborative initiatives between US teams and international teams, challenges, and opportunities.

Presentations:

  • 2:30 PM – 4:30 PM ET
    S04.1- Genetic Diversity Across the World

    Speaker: Karen Raraigh, MGC (she/her/hers) – Johns Hopkins University

  • 2:30 PM – 4:30 PM ET
    S04.2- Quality of Care Worldwide – How Can We Help?

    Speaker: Hector Gutierrez, MD – University of Alabama at Birmingham

  • 2:30 PM – 4:30 PM ET
    S04.3- Harmonization of CF Data Registries Internationally

    Speaker: Anne L. Stephenson, MD PhD – St. Michael's Hospital, Unity Health Toronto

  • 2:30 PM – 4:30 PM ET
    S04.4- IMTI Experience in Jordan

    Speaker: Muna Kilani, MBBS (she/her/hers) – The Hashemite University

    Speaker: Ahmet Uluer, DO, MPH (he/him/his) – Boston Children's Hospital, Brigham & Women's Hospital