Scroll
To Top

Jul. 23, 2015

TOPIC: Advocacy, Featured News

Rare Action™ Road Tour, Atlanta, GA

Posted by Tim Boyd

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, Beth is hoping to advance provider education for Syringomyelia and all rare diseases.

Beth and Tim

Tim Boyd and Beth Nyugen

Beth will be working to support NORD’s launch of it’s first ever State Report Card this fall (more on this to come). In addition, she will be assisting in the coordination of 2016 Rare Disease Day Activities next February. If you’re interested in either of these projects, or would simply like to collaborate with Beth and NORD on advocacy, feel free to reach out to her at bnguyen@rareaction.org, or by phone at (618) 977-6119.

Georgia State House

Next stop: Tallahassee, FL and then on to Alabama!

 

Join the road trip on twitter with #RareAction

Want to learn more about the Rare Action Network™ and how you can join?  Visit us on our website here.

About Tim Boyd

Tim is NORD’s Associate Director of State Policy. He lives and works in Washington, D.C. Feel free to reach out to Tim at tboyd@rarediseases.org or at (202) 545-3830.

One Response to “Rare Action™ Road Tour, Atlanta, GA”

  1. Robin lennon says:

    Thank you for putting syringomyiela as a rare disease. Fellow syringomyiela patient

Leave a Reply

You can use these tags: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>