Guest guest Posted September 20, 2001 Report Share Posted September 20, 2001 Hi, I am not sure whether this has already been brought up in the list or not... My CF center sent me a brochure for an internet CF tool called mycysticfibrosis.com This resource is a self management web site for people with CF. The site contains important information about CF, including educational materials about the disease. It also features daily journals with charting capabilities that allow you to track progress in different areas, such as respiratory function, digestive condition and nutritional status. Entering your child's personal information on a regular basis allows you to to use the charting function to clearly see your child's performance over time in each of these health areas. You can give your doctor access to journal as well. You can tour the site but you need to send an application if you want to be enrolled. I just sent the resquest for application so I can not tell you more for the moment but I think it can be a good tool to monitor ank keep track of your child's health data Web adress is : http://www.mycysticfibrosis.com , mom to Leo, cf almost 3 years and Colin 5 months wo cf P:S Together with this brochure, my CF center also sent me a questionnaire assessing the paren't knowledge on CF.. I think that, thanks to this great list I got an A+ ;-) .......... Quote Link to comment Share on other sites More sharing options...
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