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Introduction Children who have Inflammatory bowel disease and their families are relatively few in number and are spread throughout the United Kingdom. Often they do not have opportunities to meet other families in the same situation unless when their child is in hospital in a specialist IBD unit. Smilie’s Network aims to offer support to these families together with an opportunity for them to develop informal mutual support within NACC. Activities Smilie’s Network operates as a national network of individual families who have a child living with Inflammatory bowel disease. Local volunteers, drawn from among the families or from the wider NACC membership, organise occasional education/support meetings, publicity and fundraising activities. Smilie's Leaflet Click here to view or download the Smilie's Leaflet How to join Families who wish to be part of Smilie’s Network join NACC as members in the usual way and are also put in touch with their nearest NACC Group if they give permission for this. Provided they indicate their wish to receive information from the group, they will be sent Smilie’s People Newsletters as they are produced. The Smilie’s Network Newsletter informs people of activities in which they can participate, facilitates informal mutual support between members, informs families of relevant services offered by NACC and any other organisations and provides a forum of the exchange of experiences, opinions etc. How Smilie's Network began Smilie’s Network (formerly Smilie's People) began as a local support group for children and families who were members of the South Yorkshire Area Group of NACC. Several meetings were arranged which focused on the difficulties experienced by children and their parents, and which offered craft activities for the children alongside the information and discussion sessions. Lisa Flinders, who had become well- known to members through appearing on the TV series filmed at Sheffield’s Children’s Hospital, worked with her friends and with Peggy Cable, Secretary of the South Yorks. Group, to create a friendly character as a badge for the Group. This character became known as ‘Smilie’ and a local journalist headlined an article about the children ‘Smilie’s People’! Since then the initial group has been contacted by other families through the UK and even some from abroad, all seeking information and support. Nationally, it has become clear that an increasing number of young people are being diagnosed with Crohn’s disease, although the exact number and the reason for the increase is not clear. If you would like to receive the Smilie’s Network Newsletter and are not already doing so, please e-mail or write to NACC, 4 Beaumont House, Sutton Road, St Albans AL1 5HH with the following details: membership number; name and current address of the member; full name, date of birth, type of IBD and date of diagnosis for your child, if they are not the member. |
Crohn’s and Colitis UK is the working name for The National Association
for Colitis and Crohn’s Disease (NACC) | |
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