FDA Five-Year ALS Action Plan

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Laurie, thought I'd post the bold font paragraph of the link. Hope for the future but rather late for
many of us and those we've lost. But... finally something.

Today, the U.S. Food and Drug Administration unveiled its Action Plan for Rare Neurodegenerative Diseases including Amyotrophic Lateral Sclerosis (ALS) – a five-year strategy for improving and extending the lives of people living with rare neurodegenerative diseases by advancing the development of safe and effective medical products and facilitating patient access to novel treatments.

“The effects of rare neurodegenerative diseases are devastating, with very few effective therapeutic options available to patients. We recognize the urgent need for new treatments that can both improve and extend the lives of people diagnosed with these diseases,” said FDA Commissioner Robert M. Califf, M.D. “To face that challenge and to accelerate drug development, we need innovative approaches to better understand these diseases while also building on current scientific and research capabilities. This action plan, especially including the use of public-private partnerships and direct involvement of patients, will ensure the FDA is working toward meeting the task set forth by Congress to enhance the quality of life for those suffering by facilitating access to new therapies.”

Thanks for the link.
 
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it is important to keep at top-of-mind that this will just be A PLAN. Recall that the historic ACT for ALS legislation covers Five years, only the first two years ARE FUNDED. It will be crucial for Congress to fully fund the out years, else plans cannot become Action.
 
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