A blog about the grief after losing a child to Niemann Pick, Type C, a rare disease, and how I'm moving forward with my life.

Tuesday, February 25, 2014

Rare Disease Month - Day 25

It's February.  That means it is time to focus on Rare Diseases.  You can read more about what I wrote about the past 2 years by clicking on the links to the right.

This year, I am focusing on different people with Niemann-Pick Disease, one of the 7000+ rare diseases, and the one that took the life of my only son.

Today is Estefania, from Argentina who is in her mid 20's.  I was able to meet both of her parents at the INPDA/NNPDF Conference in Baltimore in August 2013.


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