I didn’t get the PM with the link to the recording. I also see my PM to you didn’t go through. I cannot make sense of this forum somehow. If possible, please PM me the link to the recording. Thanks!

I sent a PM with my email address but I’m not sure you got it. I find this whole forum so cumbersome and not always sure my messages get sent. Can you let me know if you got my PM with my email address?

Thanks

Kathi

I’d love to be at this Zoom but I’m having a house full of people and a big meal for our American Thanksgiving holiday. Will there be a video replay available? Thanks.

I know it’s off topic, but I’d love to hear more about what you learned at your conference on food choices for health!

I heard someone once say they use a baby stroller for their oxygen. They fold up easily (some of them!) and hold a lot of tanks/POC and supplies.  I have been looking for a stroller so I can put three tanks in it and go walking around the lake on nice weather days. I think it’s a brilliant idea!

There’s a FB group for “Pleuroparenchymal Fibroelastosis (PPFE) Support Group” that I hope PPFE patients feel helpful specific to PPFE.

Will the nebulizer form of OFEV be available to patients soon?

Hello!

I was diagnosed with Pleuroparenchymal Fibroelastosis (PPFE for short), it’s rare and difficult finding others with it, however I have found a small group. I was wondering for people who are diagnosed with disease where you go to find information on doctors who treat that disease? I know Google is a resource, but so much to weed… Read more