Standards for the centers of excellence

Posted by paxmundi @paxmundi, 1 day ago

Does anyone know if the standards for the centers of excellence have been published or made generally available to to the patient population? This would be infinitely valuable to all of us who have been struggling with pulmonologists who know so very little about our complex of diseases—BE and the panoply of infections that it so often gives rise to.

I intend to follow up with Dr. Ignatius of John Hopkins, whom I met at the March conference in Berkeley and discussed this a bit. If anyone has any updates that would be great.

If all these clueless pulmonologists, and even ID doctors from what I’ve heard, saw something from fellow professions who have actually garnered the knowledge to call themselves specialists, it may begin to seep in.

Thanks in advance for any insights any of you might have.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

scoop | @scoop | 1 day ago

https://www.bronchiectasisandntminitiative.org/Find-Care/Care-Center-Network/General-Information
https://www.copdfoundation.org/About-Us/Press-Room/Press-Releases/Article/2166/Thirty-three-centers-join-new-Bronchiectasis-and-NTM-Care-Center-Network.aspx

blm1007blm1007 | @blm1007blm1007 | 1 day ago

Hello Paxmundi-
From what I gathered from the Dallas pulmonologist there is a requirement to have a team of doctors, specialists like ID doctor, gastroenterologist doctor etc, ....dedicated to working with the specialist pulmonologist treating BE patients....team approach. Might have to have that confirmed but sounds logical because that is what NJH and Mayo have from my understanding. All corrections of my understandings are welcomed.
Barbara