Understanding VEO-IBD

The two most common forms of inflammatory bowel disease (IBD) are Crohn’s disease and ulcerative colitis. VEO-IBD, defined as disease onset in children less than 6 years of age, is characterized by chronic inflammation of the gastrointestinal tract and can affect a child’s nutrition, growth and overall development.

The incidence of VEO-IBD has increased globally over the past several decades. In addition to affecting the digestive tract, affected children may develop complications in other organs, including the skin, eyes, joints, liver, and bones. In some cases, single gene mutations contribute to disease and may also result in immune deficiencies and/or abnormalities in the function of the intestinal lining.

VEO-IBD can follow a severe and complicated course, with some patients failing to respond to standard medical therapies or surgery and, in its most severe cases, can result in death. 

Although the exact causative factors for VEO-IBD are often unknown, research indicates that it is likely caused by a combination of interacting factors, including genetic susceptibility, an altered immune system, shifts in the intestinal microbiome (the microbes normally living in the intestine), and/or environmental factors.

Over the past 10 years, our consortium has identified molecular causes of disease in select patients and developed potential curative therapies for some patients with these diseases.

The Consortium

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To understand the molecular basis of VEO-IBD and to develop individualized therapies, we established the international interdisciplinary Very Early Onset Inflammatory Bowel Disease (VEO-IBD) Consortium, bringing together leading experts in the fields of basic, translational, and clinical research.

Partners

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The VEO-IBD Consortium partners with patients, families, non-profit foundations, biotech and pharmaceutical companies, and over 350 clinical and academic centers worldwide. Through these collaborations, it fosters close cooperation among its members to improve diagnosis and develop personalized, targeted treatment strategies.

How You Can Participate

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The most effective and efficient way to advance understanding of the causes of VEO-IBD is through the participation of physicians, patients, and families in our research. Your involvement provides essential information that helps improve diagnosis and guides the development of new therapies and treatments.

Funders and Partners

  • The Helmsley Charitable Trust
  • Care for Rare Foundation
  • Crohn’s and Colitis Foundation
  • Deutsher Akademischer Austauch Dienst (DAAD); German Academic Exchange Service
  • Arbour Way Foundation
  • Regeneron
  • National Institutes of Health (NIH)
  • Egan Family Foundation
  • F. Widajaja Family Foundation
  • Fred L. Hartley Family Foundation
  • The VEO-IBD Foundation
  • Crohn’s in Childhood Research Association (CICRA) is supporting research into very early onset IBD via the UK Paediatric IBD Bioresource
  • UK Research and Innovation (UKRI) Medical Research Council
  • Kenneth Rainin Foundation
  • Children’s Rare Disease Collaborative (CRDC)