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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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power, culture and health care quality

I am white and educated.  I have certain privilege that come along with these attributes.   But I also made below the poverty line last year, my children are on Medicaid and I’m a single mom.  These are attribute that put me squarely in the “have- not” category in the  world of privilege and power transactions.   I think about this a lot in [...]

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 [...]