Discussions
Discussions
Suepink1 Check-In 11/04/2025
Can anyone direct me to advocacy please. As in increasing awareness amongst General Practitioners.
Replies
SuePink,
Hello! Insmed and other companies have been working to educate health care professionals on BNTM over the past years.
The COPDF/ BNTM Association increase public awareness and education throughout the year on their social media sites , publications, educational handouts/ handbooks, etc . The BNTM Association is highly visible at conferences throughout the world in an effort to educate health care professionals. Great progress has been made but we realize that there is alot more work to be done over time The COPDF and NTM Association hold an annual Impact advocacy conference in Washington, DC in March to meet with representatives. Let us know if you are interested in attending this event.
Thank you Ksmiles, I'm in New Zealand so I'm not much help for you there.
I write to upcoming conferences in NZ, and offer to give my patient story, and I am writing to ministers and health services etc. about NTM, when I think I've got a subject to latch it on to. I've managed quite a few emails and now I'm doing follow ups, but I'm always looking for hints and tips to improve.
Suepink,
Perhaps, you can use some content from the educational materials below: https://www.bronchiectasisandntminitiative.org/Learn-More/Educational-Materials-Resources/Downloads-Library
You can email us at contactus@bronchandntm.org if you would like assistance with advocacy.
Hi Suepink1,I would love to help you share your story. Our organization leads the planning and coordination of World Bronchiectasis Day, and over the next few months, we're aiming to gather 30 patient stories to help raise awareness.
As you may know, World Bronchiectasis Day is a global initiative that has significantly increased awareness — in 2025 alone, we reached over 250 million people! Your story could be a powerful way to inspire and inform others.
We now have access to a user-friendly platform called Storyvine, which makes sharing your story simple. All you need to do is download the app and record your answers with guided questions.
If you're interested or would like more information, please feel free to reach out to me at Alyssa@bronchandNTM.org.
I sent this video around to my family members. This was well done.
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