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Archives for: July 28th, 2015

Rare Action™ Road Tour, Houston, TX

Written by Tim Boyd on July 28, 2015

Houston, TX

Howdy from Houston,

The drive from Mobile, Alabama was a bit of a nightmare. The I-10 was jammed for hours so I finally thought, “hey, lets just take some byways and side streets.” About an hour into this bad… Read More

Rare Action™ Road Tour, Tallahassee, FL

Written by Tim Boyd on July 28, 2015

Tallahassee, FL Blog

Greetings from Tallahassee,

As Einstein famously postulated, time is relative. I will make use of this fact to take you back in time to my visit to Tallahassee, Florida (schedules prevented our advocate and me from posting a… Read More

Rare Action™ Road Tour, Atlanta, GA

Written by Tim Boyd on July 23, 2015

Atlanta Blog

Greetings from Atlanta, Georgia.

I am happy to introduce NORD’s State Ambassador for Georgia, Beth Nguyen. Beth is a registered nurse and Executive Director of Worldwide Syringomyelia & Chiari Task Force (a NORD member organization).  As a NORD State Ambassador,… Read More

NORD’s Paul Melmeyer Authors Piece in NCC Collaborator about State-Based Advocacy

Written by Christina Jensen on March 16, 2015

NORD’s Assistant Director of Public Policy, Paul Melmeyer, authored this great piece (below) in the March 2015 issue of the NCC Collaborator, the monthly publication from the National Coordinating Center for the Genetic Service Collaboratives (NCC).  NCC focuses on bringing quality genetic and newborn screening services to local communities, and… Read More