Discussions
Discussions
Research / Clinical Trials
Hi everyone, I watched Dr. Chalmers highlights from the European Respiratory Society Congress today. He mentioned the BEST study, a research study following people on Brensocatib. Does anyone have any information on this? I’d like to be involved. Thanks!
Maggie
Hello! National Patient Advocacy Day was on August 19th. Patient advocacy is a key function in the healthcare system that focuses on advocating for patients, and caregivers. In the United States, patient advocacy became prominent in the 1950s, with cancer research and treatment.
As the Patient Rights movement grew in the United States, the 1970s were a pivotal period for patient activism. An example of this activism is the American Hospital Association’s Patient Bill of Rights. Individual patient advocacy gained traction in the United States in the early 2000s.
The COPDF and the BNTM Association organizes an event, known as Impact that is held every March in Washington, DC. Meeting with your legislators on Capitol Hill is truly a great experience. Below is a link for more information on Impact Day, including the priority requests that have been made since 2019. https://www.copdfoundation.org/Take-Action/Get-Involved/IMPACT-Lung-Health.aspx
Please let us know if you have any questions. This event offers the opportunity of taking action to assist in moving research and the development of new drugs and treatments forward. Contact information is included in the link above if you are interested in getting involved. :)
BiomX just dropped a study for a drug to treat Pseudomonas, which was disappointing, but Clarametyx is now also working on clinical trials for a drug to treat Pseudomonas in the lung. Here is a link from a recent news release if you haven't seen it.
Help uncover the challenges of Non-Cystic Fibrosis Bronchiectasis (NCFBE).
The BURDEN initiative by Insmed Incorporated is seeking adults with NCFBE and caregivers for interviews. Your participation in the BURDEN initiative interviews is crucial for raising awareness about the real-life impact of Non-Cystic Fibrosis Bronchiectasis (NCFBE). By sharing your experiences, you help improve understanding, care, and resources for adults living with bronchiectasis (without cystic fibrosis), also known as NCFBE, and their caregivers.
2 years ago
I know a couple of patients interested in joining the Bronchiectasis and NTM Research Registry - How can they join?
What is the Bronchiectasis and NTM Research Registry? Is it the same as this online community? Is it something I should be a part of?
It is not our intention to serve as a substitute for medical advice and any content posted should not be used for medical advice, diagnosis or treatment. We make every effort to support our members, our medical professionals cannot and will not provide a diagnosis or suggest a specific medication; those decisions should be left to your personal medical team. While we encourage individuals to share their personal experiences with Bronchiectasis and NTM, please consult a physician before making changes to your own Bronchiectasis and NTM management plan.
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