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May. 31, 2016

TOPIC: Advocacy, Get Involved, Patients & Members

RareAction Network℠ Releases May/June State Policy Legislative Tracker

Posted by Tim Boyd
RAN_USA_States_MayJune2016RareAction continues to make strides around the country for the 1 in 10 Americans with rare diseases.
In this version of the State Policy Legislative Tracker, there is an increase in the bills being supported in both Massachusetts and Tennessee. Learn more about the bills that RareAction is tracking and supporting to improve the lives of people and families in the rare disease community.
Contact NORD to get the issues that you are facing added to this list. The RareAction Network℠ increases the awareness of those issues to key decision-makers and elected officials in the states or regions that can take action to make essential changes.
If you’re interested in taking action in your state, contact Tim Boyd at
Join the conversation online by using #RareAction

2 Responses to “RareAction Network℠ Releases May/June State Policy Legislative Tracker”

  1. My name is Amy Barto. My mom, Elizabeth Hornik, was diagnosed with a very rare neurological disease called PSP, Progressive Supranuclear Palsy. She lives in Solon, Ohio.

  2. Beverly Palomino says:

    I also have A nerve disorder It is called RSD /CRPS It is a very painful Disease A pain that does not go away Doctors have tried everything I want to become a advocate But we need more people To Rally So they can do a research on this terrible Disease How can I help?

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