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Aug. 3, 2015

TOPIC: Advocacy, Featured News

Taking Rare Action™ on the Road

Posted by Tim Boyd
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Over the next few weeks, I will be driving across the country to meet with NORD members and Rare Action Network™ advocates in their community. All told, I will be traversing over 4,000 miles, and spending time in 10 different states (my full itinerary can be found below).

In preparing for the trip, my colleagues and friends have all asked the same question: “Tim, why would you do this?” It’s a fair question, and truth be told there’s nothing I’d rather do than spend my summer driving through central Texas in 100 deg. heat (no offense, Texas).

Bad jokes aside, the real answer is pretty straightforward. As a national organization representing patients and disease-specific groups, it is important for NORD to be more active in the areas where the rare community is doing great work every day.

This idea is one of the founding principals behind the creation of NORD’s Rare Action Network™. With the ongoing implementation of the Affordable Care Act, now more than ever there are a host of health policy issues that can only be addressed at the state and local level. NORD wants to ensure that the needs of the rare disease community are being adequately addressed in these discussions. However, this cannot be achieved remotely from Washington, D.C.; it requires the expertise and passion of local advocates and local organizations.

At the front lines of this grassroots effort will be NORD’s State Ambassadors. These are local advocates (many of whom run their own organization) who will be the point people for NORD’s grassroots activity in their state. Ambassadors will act as local NORD representatives, there to assist members and advocates in coordinating advocacy activities around key policy issues.

Throughout this trip, I will be sharing the stories of our new Ambassadors and how local advocates can begin working with them. Feel free to reach out to them and share the experiences and goals of your community.

The individuals I will be introducing you to on this blog are the tip of the iceberg. NORD has been thrilled by the outpouring of interest from individuals who are either signing up for the Rare Action Network™ or expressing interest in becoming a State Ambassador themselves. Rest assured, there will be ample opportunities for you to get involved. This road trip is only the first step.

Please continue to check back to this blog for updates on my trip and to meet the new Ambassadors. Also, if you see I’ll be coming to your area, feel free to drop me a line and I’d be happy to meet up.

Here’s my itinerary for the next few weeks:

July 21-22: Atlanta, GA

July 23: Tallahassee, FL

July 24-25: Mobile, AL

July 25-26, Houston, TX

July 27-29: Oklahoma City, OK

July 30-31: Denver, CO

August 1-2: Salt Lake City, UT

August 3-6: Seattle, WA

August 7-9: Sacramento-San Francisco, CA

August 9-12: Los Angeles/Southern California


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 or at (202) 545-3830.

2 Responses to “Taking Rare Action™ on the Road”

  1. Tracy Jones says:

    I just heard about you being here in Oklahoma do you have anytime on Wednesday. I am in the Oklahoma City area

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