5th International CCHS Conference: The Future is NOW: Priorities, Partnerships, Patient Voice

The CCHS Network, Children’s Hospital, Los Angeles, Seattle Children’s Hospital, and the European Union CHS (EUCHS) Network hosted the 5th International CCHS Research Conference at the Chase Park Plaza Hotel in St. Louis, MO, June 20 – 23, 2018.

The focus of this meeting was the latest in CCHS research, advances in clinical management, and progressions in CCHS living. The 5th International CCHS Research Conference targeted collaboration among CCHS researchers, clinicians, and patients to advance understanding and treatment of CCHS. CCHS professionals and CCHS families were invited to attend.

The 2018 conference represented the 5th international gathering of the CCHS rare disease community. These historical meetings have fostered a supportive and collaborative CCHS union between professional and family populations, all with the intent of improving outcomes for CCHS patients.

CCHS clinicians and researchers from the United States and around the world were in attendance:

  • Dr. Namasivayam, M.D., University of Alabama, Birmingham
  • Dr. Doug Bayliss, Ph.D., University of Virginia
  • Dr. Isabella Ceccherini, M.D., UOC Genetica Medica Istituto Giannina Gaslini
  • Dr. Maida Chen, Seattle Children’s Hospital
  • Dr. Diego Fornasari, M.D.,Ph.D., University of Milan
  • Dr. Matthais Frerick, M.D., Children’s Hospital, Munich
  • Dr. Jose Garza, M.D. Children’s Healthcare of Atlanta
  • Dr. Hisaya Hasegawa, M.D., Tokyo Women’s Medical Center East
  • Dr. Ajay Kasi, M.D., Children’s Healthcare of Atlanta
  • Dr. Thomas Keens, Children’s Hospital, Los Angeles
  • Sheila Kun, BA, BSN, MS, FCCP, Children’s Hospital, Los Angeles
  • Dr. Iris Perez, Children’s Hospital, Los Angeles
  • Dr. Raffaele Piumelli, M.D., Meyer University Children’s Hospital, Florence, Italy
  • Dr. Martin Samuels, M.D., Great Ormond Street Hospital, United Kingdom
  • Dr. Yakov Sivan, M.D., Sheba Medical Center, Israel
  • Dr. Ha Trang, M.D., Ph.D., Diderot University, Paris
  • Dr. Sabrina Tsao, M.D., Lurie Children’s Hospital, Chicago
  • Dr. Debra Weese-Mayer, M.D., Lurie Children’s Hospital, Chicago
  • Dr. Yosuke Yamada, M.D., Japan

Presentation themes covered a wide range of topics:

  • “Important Transitions in CCHS”
  • “Penetrance and Phenotype in CCHS”
  • “Molecular Advancements in CCHS”
  • “Translational Therapies”
  •  “CCHS and Cardiac Pauses”
  •  “CCHS and Gastrointestinal Complications”
  •  “CCHS Network One World Registry”
  •  “CCHS and Pregnancy”

Presentation Videos and Power Points are available for those presenters who gave us permission to share.