Pardon Our Dust: RAREDaily Under Construction

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Holding down a job and fighting SIOD
We experienced many changes in our life because of our son Michael’s progressive rare disease, Schimke immunoosseous dysplasia or SIOD. As… Continue Reading
Thank you Frances Perraudin – YES, It Is Time The World Pays Attention To Rare Disease!
Time Magazine and Frances Perraudin’s article, “Is It Time We Paid More Attention to Rare Diseases?” articulates the inherent… Continue Reading
The Casa dos Marcos: A Son’s Plea to his Mother
Casa dos Marcos was imagined by a rare boy to fulfill all of the unmet needs of those thousands of parents, who didn’t receive social or… Continue Reading
Parental Self-Care – Introducing Dr. Vivien Keil
I would like to take this opportunity to introduce myself since this is my first blog post.  My name is Dr. Vivien Keil, I am a Clinical… Continue Reading
4th Annual Michael Zimanske Golf Tournament
On Monday August 16, 2010 in Monticello MN, the Monticello Country Club will host the 4th annual Michael Zimanske Golf Tournament sponsored… Continue Reading
Historian Tony Judt dies after two-year struggle with Amyotrophic Lateral Sclerosis
The British historian Tony Judt, considered to be one of the most important political writers of his time, died last Friday after a two-year… Continue Reading
Improve FDA’s Rare Disease Review Process
The Jewish Daily – FORWARD Opinion By Jonathan Jacoby The Jewish community has long been a leader in supporting medical research and… Continue Reading