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Apr. 22, 2016

TOPIC: Advocacy, Featured News, Get Involved

RareAction Network℠ Releases April State Legislative Tracker

Posted by Tim Boyd


We are making progress throughout the country for the 1 in 10 Americans with rare diseases.

is a list of legislative initiatives that NORD and our network of advocates are actively participating in to better the lives of people and families in the rare disease community.

Don’t see your state on the list? 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 change.

If you’re interested in getting involved in your state, contact Tim Boyd at

Follow the conversation on Twitter using #RareAction


2 Responses to “RareAction Network℠ Releases April State Legislative Tracker”

  1. Karl C Evans says:

    I have a terrible frustrating problem. I seem to have a surplus of “Serum Free Light Chain Protein” in my blood. However, the doctors of Samaritan here seem to have learned to deny the truth of lab reports coming from ARUP Laboratories of Salt Lake City, so they refuse to support my efforts to get diagnosis and treatment. I do not know what to do. My guess is that I have AL cardiac amyloidosis. Must I wait for the autopsy?

  2. Wendy Luba says:

    It sure would be nice to see a decent amount of money donated to the research of Orthostatic Tremors. As someone who has suffered from them since the late 80’s, I continue to get more and more problems and no one knows what they are or how to treat them. It’s my guess that they’re related to OT, but I’ll probably never know in my lifetime. I was very disappointed with the study being done at the University of FL because I called before it was even posted to the NIH site, was told I would be able to participate and then called back several weeks later, only to be told that I lived too far away and because the grant was so small, they could only afford to take people from the FL area.