Those of you who spend any time in hospitals know that while the relationship you have with the specialist is of critical importance. The life of your child is often quite literally in their hands and you must have the utmost trust in their judgement and in your ability to community care effectively with that person. [...]
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Okay, this post does not have much directly to do with rare pediatric diseases but it has a lot to do with what interests me… getting real people to make small changes that significantly support people’s health related needs! An undergraduate student at Harvard observed at hospitals and realized that often there was nothing the doctor [...] SOLVE is a great set of steps listed by the Children’s R.A.R.E. Disease Network (click here) designed to help you organize you to help you take action on behalf of your child. Some of the steps I did naturally, such as researching. But it was our first surgeon who told me to keep a detailed [...] |
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