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National Multiple System Atrophy Letter Writing Day
Date:3/28/2013

Advocates (RDLA) website. The RDLA has established an Action Alert portal specifically for the multiple system atrophy community. The portal makes it easy for constituents to identify their members of Congress and to compose an effective letter. Really, all we need is for as many people from the MSA community as possible to log on and tell their story. The rest is already done.”

The Multiple System Atrophy Letter campaign is important for three key reasons:

  •     It is devastating for those with MSA to have the NIH lose its rare disease research funding. Because MSA is so rare, government money for research is critical. No big celebrities are known to have MSA, so it remains an obscure disease dependent on grass roots funding from it own patient base. Unfortunately, MSA can have a devastating financial impact on families making it difficult to donate large sums of money.
  •     Approval of orphan drugs by the FDA remains a slow and uncertain process, which is a true disincentive for pharmaceutical/biotech investors and companies to back orphan drug research. As MSA is one of more than 6,500 rare diseases without a cure, seeing a clear and faster path for orphan drug approvals by the FDA is critical to millions of Americans. As such, it is important for Congress to ensure that the FDA efficiently implement orphan drug legislation passed last year as part of FDA Safety and Innovation act.
  •     Members of Congress should join the rare disease caucus to demonstrate support of so many of their constituents with rare diseases and recognize via resolutions important dates for the MSA community, March as Multipl
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