Page 35 - NTM Insight Pamphlet 2024

Since its inception, NTMir has funded leading studies. One study confirmed the suspected link between household water and infection. Another showed that NTM is more prevalent than previously thought, has impacted women more than men, and affects older populations more than younger ones. This study further confirms what Fern, Philip and an increasing number of experts already knew - NTM is an emerging infectious disease with devastating consequences.
In addition to funding research, NTMir has successfully lobbied Congress to recognize NTM as a serious disease pathogen. The organization works with the National Institutes of Health and other leading centers of excellence to further study of the disease, has helped form dozens of patient support groups, and helps recruit patients for important clinical trials of new medications. NTMir has worked to secure approval for off-label use of a key drug proven effective against NTM and to ensure that medications vital to NTM treatment are prioritized when
in short supply.
What We Do
• Fund or co-fund NTM research.
• Expand and maintain a large network of online and in-person support groups for patients and caregivers worldwide. To join a support group or to inquire about starting one in your area, email ntmmail@ntminfo.org.
• Host physician and patient education meetings and webinars across North America and abroad.
• Develop and maintain strong relationships with leading researchers and clinicians.
• Host scientific meetings attended by leading researchers and clinicians.
• Provide an online Physician Referral List so patients can find doctors who know how to treat their NTM lung disease appropriately.
• 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.
ntminfo.org
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