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

published at : 29/10/2017

Over the last several years research into the basic biology of CCHS and respiratory drive have exposed some of the etiology of CCHS (Kumar et al., 2017; Joubert et al., 2016), clinical advancements have enriched patient outcomes (Diep, 2015), and individuals living with CCHS have flourished. The 5th International CCHS Research Conference will target collaboration among CCHS researchers, clinicians, and patients to advance understanding and treatment of CCHS. CCHS professionals and CCHS families are invited to attend. The 2018 conference will represent 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. The 2018 Conference planning committee is a diverse team of CCHS experts and CCHS Family Network leaders. CCHS clinicians and researchers from the United States and around the world will be in attendance. Speakers include Dr. Doug Bayliss, Ph.D., University of Virginia; Dr. Isabella Ceccherini, M.D., UOC Genetica Medica Istituto Giannina Gaslini; Dr. Maida Chen, M.D., Seattle Children’s Hospital; Dr. Diego Fornasari, M.D.,Ph.D., University of Milan; Dr. Thomas Keens, M.D., Children’s Hospital, Los Angeles; Dr. Iris Perez, M.D., Children’s Hospital, Los Angeles; Dr. Martin Samuels, M.D., Great Ormond Street Hospital, United Kingdom; Dr. Yakov Sivan, M.D., Dana Children's Hospital, Tel Aviv Sourasky Medical Center, Israel; Dr. Ha Trang, M.D., Ph.D., Diderot University, Paris; Dr. Debra Weese-Mayer, M.D. Lurie Children's Hospital; and Dr. Yamada, M.D., Japan, as well as other leaders in the CCHS community. Presentation and workshop themes cover a wide range of topics: “Important Transitions in CCHS”, “Penetrance and Phenotype in CCHS”, “Molecular Advancements in CCHS”, “Translational Therapies”, and “Improving Patient Outcomes”. A more detailed list of speakers and presentation topics will be available mid-fall at the CCHS Network website (

update: 29/10/2017

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