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• Assist patients who e-mail and call, providing comfort and guidance so they can improve the success of their treatment.
• Distribute “Insight: A Patient’s Perspective,” the flagship NTM lung disease informational pamphlet, around the world in 11 languages.
• Maintain ntminfo.org, the HUB for all things NTM.
Our Accomplishments
• Established Rapid Information Pilot Studies (RIPS)TM, funding scientific research that can quickly provide early-stage answers to important questions and provide the base data for major research grant applications.
• Established the NTM Patient Registry to help accelerate clinical trials for new drugs to treat NTM lung disease.
• Teamed with the American Lung Association to jointly fund research. • Published the first Nutrition Guide for NTM lung disease patients.
• Testified in Congressional Appropriation Hearings on Capitol Hill.
• Secured language amendments for the fiscal 2006 - 2010 budget years directing the National Institutes of Health and the Centers for Disease Control and Prevention to address the concerns of NTM patients.
• Successfully coordinated compassionate use availability for the drug Lamprene/Clofazimine, so patients who have no alternative can receive this life-sustaining medication.
• Worked to ensure that Amikacin, a drug vital to the treatment of NTM lung disease, is prioritized for NTM patients when in short supply.
• Helped ensure a strong patient presence at the FDA’s Patient-Focused Drug Development meeting.
• Worked with industry and other constituents to help bring the first FDA-approved treatment to market for NTM lung disease.
INSIGHT - A Patient’s Perspective
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