Crohns in Childhood Research Association (CICRA)

Crohns in Childhood Research Association (CICRA)

At a glance

Causes

  • Children / families
  • Health and well being / research and care
  • Young people

Other details

Organisation type: 
Charity
Geographical remit: 
National - Britain

Objectives

We are the specialist charity for children and young adults affected by Crohns and colitis. Our aim is for children to lead full and happy lives, unaffected by IBD.

To stop IBD impacting childhood, we will support families, research better treatments, work with medical professionals to improve care and campaign to increase understanding of Crohns and colitis.

Activities

Family supportWe provide information for parents with their own guide to IBD, a separate guide specifically for teachers and a booklet for children and families explaining the words used by doctors and nurses. We hold Family Information Days across the UK, where medical specialists in childhood IBD discuss with families the different ways to treat and cope with the conditions. Combining fun activities for different age groups with discussion groups on important topics, these days offer an opportunity for both parents and children to meet others who are in similar situations.

Reassuring children and young peopleWe offer free of charge ‘Can’t wait’ cards to help children and young people explain their illness when in urgent need of toilet facilities. We also offer a Pen/E-Pal scheme for children to chat and support each other by e-mail.Children are important at our Family Information Days which are held at least three times per year. Along with presentations from medical professionals who specialize in childhood Inflammatory Bowel Disease, we have inspiring young people talking about their experiences of living with IBD. The days also have discussion groups for teenagers (11-16 years) and young adults (16+) with a doctor and IBD nurse and under 11s are entertained by a professional children’s entertainer.

Improving careThrough our research and our links to IBD centres across the UK, we help increase understanding of crohns and colitis. We fund trainees, nurses and final year medical students to attend scientific and medical meetings and present their work to others. We work with health service leaders to improve care for children and we work with children and families and our medical network to identify any areas requiring more attention to ensure young people get the care they need.

Ground-breaking researchWe advance knowledge of childhood IBD by supporting high quality, peer reviewed medical research.CICRA-funded research has led to enteral nutrition being, in most cases, the first line of treatment for children and has also led to new treatments being taken forward for clinical trials.Through our research, we have increased understanding of what IBD is, and how it affects children and young people. Thanks to our supporters, we have driven the development of childhood IBD as an area for special focus by many leading clinicians and scientists.

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