International Forum on Visceral Myopathy 2024: Advances in the Knowledge of the Disease.

Pascal De Santa Barbara, Isabella Ceccherini, Robert O Heuckeroth, Carlo Di Lorenzo, Maria M Alves, Arthur Beyder, Osvaldo Borrelli, Ludovica Cacopardo, Rachel Ceron, Jihong Chen, Federica Chiappori, Antonio Contessa, Roberto De Giorgio, Antonella Diamanti, Maria Grazia Faticato, Sandrine Faure, Sohaib K Hashmi, Jan D Huizinga, Raj P Kapur, Cecile Lambe, Laurence Lancon, Ryan McManigal, Hayat Mousa, Alessandro Palmitelli, Victor Perreaux, Alessio Pini Prato, Michela Pitto, Elisa Proietti, John Rendu, Anna Rybak, Kenton M Sanders, Sabah Sardar, Vincenzo Stanghellini, Renato Tambucci, Nikhil Thapar, Pieter Vanden Berghe, Massimo Vassalli, Qianqian Wang, Michael Wangler, Sharon Wolfson, Almira Zada, Jiliang Zhou, Federica Viti

Journal: Neurogastroenterology and motility 2026;38(4):e70317

PMID: 41981708

Abstract

BACKGROUND

Visceral myopathy (VSCM) is an ultra-rare life-threatening condition characterized by severe impairment of gastrointestinal (GI), genitourinary, and uterine smooth muscle. This disorder represents a significant clinical challenge due to variable presentation and the lack of standardized diagnostic and therapeutic protocols.

METHODS

To discuss advances in the field, scientists and clinicians with a special interest in VSCM met in Arenzano, Genova, Italy in October 2024 for the second International Forum on Visceral Myopathy 2024 (IFVM2024) (https://ifvm2024.ge.ibf.cnr.it/).

KEY RESULTS

As in the previous edition of the event (https://poic-e-dintorni.org/efvm-2022/), attendees included clinicians and researchers from around the world who study this disease, representatives from support organizations, patients affected by VSCM and their families, and companies that co-funded the event. The present manuscript aims to summarize knowledge shared during the IFVM2024 conference, thus providing an updated state-of-the-art summary of VSCM biology and disease management.

CONCLUSIONS

Here, we pay particular attention to the epidemiology of the disease, histopathology, genetics, novel treatments, advances in molecular and cell biology, experimental models, and the lived experiences and impact of this disorder on families.

© 2026 The Author(s). Neurogastroenterology & Motility published by John Wiley & Sons Ltd.

Address: Physiology and Experimental Medicine of the Heart and Muscles (PhyMedExp), University of Montpellier, INSERM, CNRS, Montpellier, France.; UOSD Aggregation Area of the Research Laboratories, IRCCS Giannina Gaslini Institute, Genoa, Italy.; Department of Pediatrics, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA.; The Children's Hospital of Philadelphia Research institute, Philadelphia, Pennsylvania, USA.; Nationwide Children's Hospital, Columbus, Ohio, USA.; Department of Clinical Genetics, Erasmus University Medical Center-Sophia Children's Hospital, Rotterdam, the Netherlands.; Department of Pediatric Surgery, Erasmus University Medical Center-Sophia Children's Hospital, Rotterdam, the Netherlands.; Enteric Neuroscience Program (ENSP), Division of Gastroenterology and Hepatology, Department of Medicine, Mayo Clinic, Rochester, Minnesota, USA.; Department of Physiology and Biomedical Engineering (BMEP), Mayo Clinic, Rochester, Minnesota, USA.; Neurogastroenterology & Motility Unit, Department of Gastroenterology, Great Ormond Street Hospital, London, UK.; Department of Information Engineering and Research Center 'E. Piaggio', University of Pisa, Pisa, Italy.; Farncombe Family Digestive Health Research Institute, Department of Medicine, McMaster University, Hamilton, Ontario, Canada.; National Research Council, Institute for Biomedical Technologies (CNR-ITB), Milano, Italy.; Uniti per la PIPO-Patient Advocacy Organization, Brescia, Italy.; Department of Translational Medicine, University of Ferrara, Ferrara, Italy.; Digestive Diseases and Nutritional Rehabylitation Pediatric Hospital Bambino Gesù, Rome, Italy.; Pediatric Surgery, IRCCS Giannina Gaslini Institute, Genoa, Italy.; Department of Pediatrics, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA.; The Children's Hospital of Philadelphia Research institute, Philadelphia, Pennsylvania, USA.; Department of Laboratory Medicine and Pathology, Seattle Children's Hospital and University of Washington, Seattle, Washington, USA.; Department of Laboratory Medicine and Pathology, Seattle Children's Hospital and University of Washington, Seattle, Washington, USA.; Department of Pediatric Gastroenterology and Nutrition, Hospital Necker-Enfants Malades, Université Paris Cité, Paris, France.; Association des POIC-Patient Advocacy Organization, Marseille, France.; World Visceral Myopathy Foundation, Dallas, Texas, USA.; Poic e dintorni APS-Patient Advocacy Organization, Rome, Italy.; Nantes Université, Inserm, TENS UMR1235, The Enteric Nervous System in Gut and Brain Diseases, IMAD, Nantes, France.; Umberto Bosio Center for Digestive Diseases, The Children Hospital, AOU SS Antonio e Biagio e Cesare Arrigo, Alessandria, Italy.; Institute of Biophysics, National Research Council, Genoa, Italy.; U.O.C. Di.P.S, IRCCS Istituto Giannina Gaslini, Genoa, Italy.; Department of Internal Medicine and Medical Specialties, University of Genoa, Genova, Italy.; Univ. Grenoble Alpes, Inserm, U1216, CHU Grenoble Alpes, Grenoble Institute Neurosciences, Grenoble, France.; Department of Physiology and Cell Biology, Reno School of Medicine, University of Nevada, Reno, Nevada, USA.; James Watt School of Engineering, University of Glasgow, Glasgow, UK.; Alma Mater Studiorum-Università di Bologna, Bologna, Italy.; Gastroenterology and Nutrition Unit, Bambino Gesù Children's Hospital IRCCS, Rome, Italy.; Stem Cell and Regenerative Medicine, GOS Institute of Child Health, University College London, London, UK.; Gastroenterology, Hepatology and Liver Transplant, Queensland Children's Hospital, Brisbane, Queensland, Australia.; School of Medicine, University of Queensland, Centre for Child Nutrition Research, Queensland University of Technology, Brisbane, Queensland, Australia.; Laboratory for Enteric NeuroScience (LENS), TARGID, KU Leuven, University of Leuven, Leuven, Belgium.; Institute for Stem Cell Biology and Regenerative Medicine, Stanford University School of Medicine, Stanford, California, USA.; Department of Molecular and Human Genetics, Baylor College of Medicine, Houston, Texas, USA.; Jan and Dan Duncan Texas Children's Neurological Research Institute, Houston, Texas, USA.; Department of Biomedical Sciences, Faculty of Medicine Universitas Padjadjaran, Bandung, Indonesia.; Department of Pharmacology, Toxicology & Neuroscience, LSU Health Shreveport, Shreveport, Louisiana, USA.

Link outs

Free resources

Subscription / membership required

Bant logo

© Copyright 2026, Nutrition Evidence

NED wishes to thank the following organisations for their support:

We use cookies to improve your experience and analyze site traffic with Google Analytics. By continuing to use our site, you agree to our use of cookies. Learn more.