Tag Archives: Congress

September 2013 is CMT Awareness Month! What Will You Do to Spread Awareness?

September, CMT Awareness Month is fast approaching. What will you do to spread awareness. There are many ways that we can all help ourselves, by increasing awareness of our rare condition. Something as simple as changing your Facebook photo to the new CMT ribbon: Continue reading

Posted in Charcot-Marie-Tooth disease, CMT, CMTA, Health CMT, Neurologist, neuromuscular disease, peripheral neuropathy, STAR | Tagged , , , , , , , , , , , , , | Leave a comment

Rare Diseases Deserve Access to Accelerated Approval – Call Congress TODAY!

Rare Diseases Deserve Access to Accelerated Approval – Call Congress TODAY!
The FDA recently issued a draft guidance on the Expedited Approval Programs which they say fulfills the FDASIA mandate on Accelerated Approval for Rare Diseases, however the guidance does not address specific issues related to rare disease drug development as required by FDASIA. This is unacceptable! Continue reading

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Budget Control Act of 2011 could have a devastating effect on research

Under the Budget Control Act of 2011, federal programs face an across-the-board funding cut of nearly 8 percent in January 2013, if Congress hasn’t reached agreement on a budget deficit reduction plan. Continue reading

Posted in ALS, Alzheimer's, Charcot-Marie-Tooth disease, Health CMT, human clinical trials, MS, neuromuscular disease, Parkinson's, peripheral neuropathy, Rare disease day, STAR, stem cell research | Tagged , , , , , , , , , , , , , | Leave a comment