One of my daughters was diagnosed with narcolepsy during her senior year of high school. It is one of those "hidden" diseases that doesn't get much attention. The good news is that as a result of advocate Julie Flygare and others, the FDA has chosen narcolepsy as the focus of a public meeting on September 24. 2013, to learn more about the disease, straight from the people who are challenged by it every day.
This initiative is part of the Patient-Focused Drug Development initiative. "For each disease area, the Agency will conduct a public meeting to discuss the disease and its impact on patients' daily lives, the types of treatment benefit that matter most to patients, and patients' perspectives on the adequacy of the available therapies. These meetings will include participation of FDA review divisions, the relevant patient community, and other interested stakeholders.
For additional information see the Unite Narcolepsy website. If you have narcolepsy or are close to someone who has it, you can complete an on-line survey to provide input to the FDA on the impact of this disease.
This initiative is part of the Patient-Focused Drug Development initiative. "For each disease area, the Agency will conduct a public meeting to discuss the disease and its impact on patients' daily lives, the types of treatment benefit that matter most to patients, and patients' perspectives on the adequacy of the available therapies. These meetings will include participation of FDA review divisions, the relevant patient community, and other interested stakeholders.
For additional information see the Unite Narcolepsy website. If you have narcolepsy or are close to someone who has it, you can complete an on-line survey to provide input to the FDA on the impact of this disease.
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