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Multiple System Atrophy Advocacy

One of The MSA Coalition's® goals is to become more vocal about multiple system atrophy with our elected officials and we need your help.  As a rare disease community it is very important that our Congressmen and Senators be aware that they have constituents suffering from MSA.  Every year important health legislation is being discussed and passed by our Nation's government.  We as a group need to create noise so our Representatives will keep us in mind as they debate and vote on healthcare policy that affects us.

Here are some ideas that you can write or call your elected officials to discuss:

  • Tell them what MSA is, how long it took to get diagnosed, and how it impacts your life
  • Talk about the symptoms of MSA and how disabling they can be.
  • Ask them to support legislation that promotes research into rare diseases or that improves reimbursement for rare diseases. 
  • Tell them about the difficulties in qualifying for government disability when you have a rare disease.
  • Thank them for voting for legislation that improves the FDA's ability to quickly approve drugs for rare conditions such as the Food and Drug Administration Safety and Innovation Act.

Here are two links to websites that make it easy to call or email your elected officials.