Monthly Archives: July 2013

The clinical Global Registry for Inherited Neuropathy (GRIN) and the Rare Disease Clinical Research Network (RDCRN) contact registry are very different types of databases. 

As a contact registry, the RDCRN collects limited data on patients with CMT.   For example,… Continue reading

Another Successful Year Spreading CMT Awareness

Forty-six schools, eight states, 6600 students. The third year of theHereditary Neuropathy Foundation’s School Outreach Program was our best yet! From the authors’ home state of Rhode Island, to our current home in New York, and on out to Chicago,… Continue reading

Strawberry Pistachio Semifreddo

Strawberry-Pistachio-Semifreddo[1]One of my favorite summer-time treats is homemade ice cream. I remember watching my mom standing over a simmering pot of custard, surrounded by a pile of just peeled Michigan peaches. Meanwhile, my dad was getting the ice cream maker… Continue reading

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