Our Impact: VEOIBD

What is Very Early Onset Inflammatory Bowel Disease?

Inflammatory Bowel Disease (IBD) is a term used to describe disorders that cause chronic inflammation in the digestive tract. Common examples include Crohn’s disease and Ulcerative Colitis.  IBD can affect someone at any point in their life beyond 6 years of age.  Conversely, Very Early Onset Inflammatory Bowel Disease (VEOIBD) affects children less than 6 years of age.  It is often severe and debilitating, and it can overlap with other immune deficiencies and/or rare diseases.  Children affected often do not respond to conventional therapies or surgeries.

Sevkan (pictured here, surrounded by his family and care team) was saved from debilitating VEOIBD caused by a genetic defect known as interleukin-10 receptor deficiency.  He was cured by the Care-for-Rare team through accurate diagnosis, followed by a successful stem cell transplant.  He now leads a healthy life.

After discovering the first patients with a defect in the interleukin-10 receptor over ten years ago, the Care-for-Rare Foundation started helping children with severe inflammatory bowel disease worldwide.  Together with renowned doctors and scientists in the USA, Canada, Great Britain and Austria, the foundation offers a platform for elucidating the causes of the disease and the development of new therapy methods: The VEOIBD Consortium.  One of Care-for-Rare’s most successful global Alliance networks, the mission of the consortium is to illuminate all underlying genetic defects in children suffering from VEOIBD and, based on these findings, to research and apply urgently needed therapies.

Since 2013, this ambitious global project has been financially supported by the Leona M. and Harry B. Helmsley Charitable Trust New York, and the National Institutes of Health (NIH), among others.  The coordinating centers of the Care-for-Rare VEOIBD Alliance are the Boston Children’s Hospital, Harvard Medical School, the Dr. von Hauner Children’s Hospital, LMU Munich, and the Hospital for Sick Children, Toronto. In addition, the universities of Stanford, Yale, Los Angeles, Oxford, Vienna, Jerusalem, and Utrecht are integrated into the network.

This video highlights accomplishments of the VEOIBD consortium, as well as Care-for-Rare’s thematic networks centered around rare diseases and personalized medicine. We invite you to learn more on our Alliance webpage.

We continuously seek patients to participate in our studies so we can help all children suffering from VEOIBD.  If you, a loved one, or someone you know is interested, please visit the consortium webpage to learn how you can be involved at veoibd.org.

If you are a parent, physician or researcher seeking to learn more, consider viewing a sampling of some of our joint publications:

Very Early Onset Inflammatory Bowel Disease: A Clinical Approach with a Focus on the Role of Genetics and Underlying Immune Deficiencies.

The Diagnostic Approach to Monogenic Very Early Onset Inflammatory Bowel Disease.