Do you stay on top of legislation that can affect LEMS and rare disease research?
The recent debt ceiling budget negotiations just recently concluded, were all over the news. Having an ultra-rare disorder like LEMS, we are all too aware of how funding for ongoing research is critical to new and better treatments. It’s important to stay in tune with those laws which may impact Federal research dollars available.
The Debt Ceiling Deal has frozen “other health spending” which includes Federal Research dollars. Here’s a brief statement by Peter L. Saltonstall, President and CEO of the National Organization of Rare Disorders (NORD), illuminating what we all need to be aware of and advocate for. His statement is HERE.
And HERE is the recent Lambert-Eaton News article on this topic.
If you have the opportunity to make your opinion known to your national or state congressional representatives, this will give you the background to do so. Do you stay on top of legislation that can affect LEMS and rare disease research?
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