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Aspiration

We aspire to provide support for people impacted by rare pediatric diseases by sharing stories, providing information, and building community.

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Project Health: Meeting needs with simple ideas

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 [...]

A Sample Letter to a Representative

I have often been told by well meaning people to write a letter.  The letters are meant to serve different purposes and to address a variety of hurdles that I have encountered.  Letters to doctors, health insurance administrators, politicians, etc.  But to be honest, I have never felt comfortable taking their advice.  What would I [...]

If air travel worked like health care

More satire! I have written a lot about how much time it takes to manage health care… the appointments, insurance, travel arrangements, sending documents around, finding specialists, getting specialists to talk to each other and on and on. This video does a brilliant job of making that point by showing what air travel [...]