Wednesday, March 11, 2015

Rare disease day!

On Friday Febuary 27th we went up to the Utah State Capital to celebrate Rare disease day. It turned out great. There were many speakers who spoke on living with a rare disease and parents who have a child with a rare disease. People of the Legislature spoke and some medical professionals. My sweet friend Season spoke about Aware of Angels. She did such a great job! The Governor declared a Utah Rare Disease day, that was also very neat. Chad and I attended a conference that next day at the U of U for Rare Disease day. It was very good, we learned a lot. We are so grateful to know so many incredible families who are fighting such a hard fight with a child with a rare disease. 

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