Federal Update
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OCTOBER 2009 The national PKU alliance, Society for Inherited Metabolic Disorders, and other organizations have been working with Senator Kerry to introduce legislation that would federally mandate coverage of medical foods and supplements for inborn errors of metabolism. Here is an example of the policy statement from the SIMD Right now, the legislation is being written in Senator Kerry's office and is likely to be introduced very soon! Please, act now to ensure that mitochondrial disorders and the supplements used by mitochondrial disease patients are included! 1. Sign the petition in support of this bill 2. Write an email directly to Senator Kerry Click here for a sample letter that you could send It is my understanding after speaking with physicians and leaders at the NIH and other organizations that your stories and letters DO make a difference, but time is of the essence! Direct your questions to Cristy or Matty (events@mitoaction.org)
You can advocate in two ways that take just a few minutes.
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