For both policy and funding, and sometimes even health agency priorities, the place to go is the U.S. Congress. For that reason, we have a representative visiting congressmen's offices almost every month.
The aids listen to many constituents and special interest lobbyists all day long. It's the system and neuro-endocrine-immune disease concerns needs should not be left out.
The message is more funding for research and policies that are appropriate for complex, hard-to-diagnose and disabling diseases.
In 2014, our organization started advocating for the 21st Century Cure to include more research funding for ME/CFS and more flexibility to the FDA to approve drugs for chronic disease that affect more than 200,000, cause debilitation and have no approved drug, which is the case in ME/CFS.
Also, PANDORA Org Ambassador Camille Carswell visited her congressman's office with a similar message.
Last update: September 22, 2014
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