Children and their families tell us that CICRA is so important because we provide trusted information and a reliable source of support that many describe as a lifeline. We are a small charity dedicated to helping them live as normal a life as possible. To stop IBD impacting children, we are working hard on many fronts:
information to give them knowledge and power over their condition…
Through our website and information booklets, we inform them about different aspects of IBD from psychological issues to treatments to diet and nutrition. We provide information to schools and teachers, we help increase the knowledge of general paediatricians, and we reassure children with straightforward, easy to understand insights into all aspects of Crohn’s and colitis.
research for better treatments and to find a cure…
We advance knowledge of childhood IBD by supporting high quality, peer-reviewed medical research which has led to new treatments being taken forward for clinical trials. Our research programme over 40 years has helped train many specialists and led to better understanding of what goes on in our bowels. Current research is looking at how treatments could be personalised to individual patients, avoiding the need to try different treatments in the search for the one that works for a child.
support to help them live with the disease…
We give children and families the opportunity to spend time with others in similar situations, and share their experiences of living with IBD. Growing up is hard enough, without having each and every rite of passage ruined by a chronic disease you can’t talk to anyone about. Being able to hang out with other people who know what they are going through is the one thing they all want – to know they are not alone, to feel they are normal kids.
a voice to say what matters to them…
Children inspire our work, as they approach their disease with maturity and grace despite knowing they will have to deal with it for the rest of their lives. We give them a voice in all the areas that affect their health and wellbeing. From a seat at the table of medical professional associations to conferences on paediatric IBD to telling the public and their friends what it is really like to live with IBD.
In 2018, we have been supporting children with Crohn’s and colitis, and their families, for forty years. Last year, we surveyed children and families to understand what mattered most to them. Although the dream of a cure featured highly, it was the impact of IBD on childhood that was their greatest concern. So, we have developed a ten year strategy focussed on countering the impact of Crohn’s and colitis on educational achievement and physical and mental development, to give children back their childhood and help them transition into adult life without the frustrations and complications currently experienced.