Rare Disease Day

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2015-03-23

"Road To The Cure" - Rare Disease Day Symposium at the Sanford/Burnham Research Institute"

I was very fortunate to be able to attend a Rare Disease Day Symposium at the Sanford Burnham Research Institute in La Jolla, California. This campus is located in a coastal area, and the views were quite stunning. I wish more of us could have been able to attend.

This symposium was entitled "Treating Disease with Sugars," a befitting title especially related to GNE-myopathy. Mr. T. Denny Sanford, AN Honorary trustee of Sanford Burnham reminded the participants that we were there to get a good basic presentation of the many important research projects going on in rare disease. The structure of this symposium was very unique as it brought together faculty, students, scientists, doctors, patients, and families. We are all stakeholders in finding cures through presenting and questioning ongoing research. By listening and collaborating with both patients as well as scientists, we will be bring effective therapies sooner to the patients.

For more read http://www.columbian.com/news/2015/apr/17/locals-make-motivated-return-to-boston-marathon