Other problems with digestion of food and intake of water


Other problems with digestion of food and intake of water

Eating healthy food and drinking are essential for a pleasant life, so this is true as well for Cornelias.

But the genes can create some hurdles to be aware of. We often talk about the 'tube' from mouth to .... (where you go to the toilet)
Cornelias can have issues in this tube; from the beginning to the very end.

Swallowing, drinking… Why does the tummy seem to hurt, and why isn't the stool ok?

Why is my child not growing as fast as other children and is that problematic?

These and many other topics about the digestive system will be discussed. And again, we have learned so much about how most of these issues can be dealt with. Not least from tips from other parents.

10 minutes of introduction by Anne-Marie Bisgaard, Angelo Selicorni and Peter Gillett. They both have their own expertise regarding the above mentioned subjects and will introduce themselves briefly.

30 minutes for interaction, questions and discussion.

Meet our experts

We have done our best to invite those from around the world to give you the insights you hope for. Professors, teachers, experienced parents and siblings will discuss the topics for the best quality of life possible. Our motto; TOGETHER!

Angelo Selicorni

Angelo Selicorni

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MD, Director of Pediatric Unit at ASST Lariana Como, Italy

He has been involved in the diagnosis and in the medical follow-up of patients with genetic syndromes like Cornelia de Lange syndrome since 1990. He is working at Telethon, has written many articles and other publications on CdLS and other genetic syndromes and is a paediatric expert on gastro-oesophageal reflux disease in CdLS

He is a paediatrician and medical geneticist working in the paediatric department at ASST Lariana, Como, Italy. 

Medical Director of the Italian CdLS support group, the past president and current member of the Scientific Advisory Council of the CdLS World Federation. 

Peter Gillett

Peter Gillett

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Consultant Paediatric Gastroenterologist at the Royal Hospital for Sick Children, Edinburgh Scotland, UK.

Peter's training was in Newcastle and Edinburgh and the Children’s Hospital in Vancouver and took up his current post in 2001. His interests are coeliac disease, upper GI and small bowel disorders, endoscopy and constipation and its improved management, informatics, education and engagement with colleagues and families to make holistic management more consistent and responsive.

He established the SE Scotland regional paediatric coeliac service in 2001 and has been an Advisor to Coeliac UK for over 10 years and sits on their Health Advisory Council. He was a member of the Scottish Government Group developing the Gluten-Free Food Service and was a member of the NICE Coeliac Disease NG20 group, currently chairs the BSPGHAN Coeliac working group and co-leads the Scottish Government new coeliac strategy which aims to provide optimal diagnostics and ongoing management for patients with CdLS.

He has an interest in GI problems in neurodevelopmental disorders. He was a member of the international guideline group and helped develop the guidelines for management of medical and surgical issues in CdLS published in 2018. His goal is to help improve other health care professional’s awareness of CdLS specific issues and generic GI problems in neurodisability. Peter is the Medical Director of the CdLS Foundation UK and Ireland and a member of the Scientific Advisory Council of the CdLS World Federation.

Anne-Marie Bisgaard

Anne-Marie Bisgaard

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Anne-Marie is a consultant paediatrician specialising in child neurology and neurodevelopmental disorders. She works at the Centre for Rare Diseases and Centre for Rett syndrome at University Hospital of Copenhagen, Rigshospitalet.

She did her PhD within the clinical genetic area in 2007 (The phenotype of patients with submicroscopic chromosomal abnormalities and mental retardation. Description of new microdeletion syndromes.). Since then, her research focus has been on neurodevelopmental disorders, which in recent years mainly has been within Cornelia de Lange syndrome and Rett syndrome and related disorders. The focus is both on the molecular causes and mechanisms for disease and on clinical issues and how to manage these.  

Before then, Anne-Marie did her training at several paediatric departments in Copenhagen and Næstved and at the Epilepsy Hospital in Dianalund.

She is member of the Scientific Advisory Committee of the Danish Association of Families with CdLS and of the Scientific Advisory Council of the CdLS World Federation.

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