Rare digestive disorders in children consists in several diseases characterized by inherited or acquired defects of the gut. They include genetic disorders of absorption, developmental anomalies, pancreatic disorders, polyposis, inflammatory bowel diseases, etc. Many of these diseases are characterized by failure to grow and require nutritional assistance and more specifically home parenteral nutrition for very long periods (from months to years). The rare digestive diseases also require a platform of endoscopy with expert pediatricians. The centre for rare digestive diseases coordinates the French rare digestive disease network MaRDI (www.centredesmardi.org) which is devoted to rare gastrointestinal disorders in adults and children, forming a network of centres in France. The centre received its legal agreement in November 19th 2004. Since 2013, its activity is evaluated yearly and its agreement renewed.
The centre is in charge of a home-parenteral nutrition centre. It provides cares, phramaceutlcal production of nutritional bags, education of patients and their families, a 24/7 access to a senior specialized doctor and a 24/7 access to emergency cares.
A fully equiped endoscopic plateform for pediatric patients is available with a 24/7 access to operating rooms. The centre allows upper gastrointestinal endoscopy, colonoscopy, capsule endoscopy and double balloon endoscopy with expert physicians. It is recognized for rare invasive procedures like polypectomy in the small intestine, stent placements, dilations, fecal transplantation, etc. More than 1000 procedures are done each year in chidren from birth to adulthood.
The centre has developed an expertise in biotherapies with a cohort > 150 patients. It offers an access to all the biologics available on the market or through international clinical trials. With several publications in this field, the centre is recognized as a European expert centre.
Therapeutic education is a hallmark of the centre with several programs including oral rehabilitation of patients with feeding disabilities; home parenteral nutrition; enteral nutrition and pediatric inflammatory bowel diseases. Programs for the transition to adulthood are in development. Several booklets, documents or e-tools have been
created by the centre.
The centre is in strong connexion with several patients associations and associations of care-givers. It contributes each year to several meetings and communications for the general public.
It coordinates or participates to more than 12 master degrees and universitary diplomas. It has developed three different post-universitary formations for pediatricians and care givers. The centre receives residents from whole France and foreign countries.
Finally, the centre is in strong relationship with a research team aggreed by University Paris Diderot, the French Institute for Health Research and the Research ministry (http://www.cri1149.fr/lesequipesj?