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

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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 [...]

South Korea provide free medical care for rare diseases

I don’t profess to know anything about South Korea or their health care system.  But none the less, I was surprised to read the headline “21 More Rare Diseases Get Free Coverage“ in the Korea Times.  The article goes on to say that families below a certain income have free medical coverage for rare diseases, [...]