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    • #12906

      Many of you likely follow the Pulmonary Fibrosis Foundation in their efforts to raise funds, awareness and education on this disease to patients like us. Recently I became aware of a free webinar they are hosting, which is coming up on June 11th, and wanted to share those details with you in the event you might be interested in joining in online.

      The webinar is specifically about idiopathic pulmonary fibrosis (IPF), which I know many patients on this forum have, so I thought you might find this webinar of interest. I cannot endorse the content of the webinar or encourage participation in it, I simply wanted to post information here for the purpose of information sharing.

      Here are the details if you’re interested.

      Abstract (verbatim):

      Patients with idiopathic pulmonary fibrosis (IPF) are no strangers to fragmented care. According to recent research, 70% of clinicians say that addressing poor communication between care teams would be the best way to improve IPF-related care in their setting.

      We can do better. This engaging webinar provides practical tips for reducing IPF treatment delays and improving quality of life through well-coordinated care and patient-centered, shared decision-making. Additionally, two IPF experts explain current guideline recommendations for antifibrotic therapy and supportive treatments. By joining the conversation you will have the opportunity to ask the experts questions and learn how your team can support personalized IPF treatment decisions.

      Details: Monday, June 11th at 2:00PM EST/ 11:00AM PST.

      To register for free, please visit: https://primeinc.org/webinars/1568?s=pff

    • #12929
      Jay Turbes-s
      Participant

      Hi, Charlene

      The webinar info. says:

      Intended Audience: Physicians, Nurse Practitioners, Physician Assistants, Pharmacists, Nurses, and Case Managers

      — not including “plain folks” like patients and caregivers. The head guy for this webinar, Dr. Cosgrove, CMO at National Jewish, is known to most with respiratory issues here in the Denver area. By my experience as an IPF caregiver here in CO, National Jewish is an elite institution like Mayo that doesn’t involve regular people unless you’re a lab rat candidate for one of their many drug trials. Their pulmonary rehab. program refused my charge as a patient of CO’s most prominent HMO, Kaiser/CO, and they don’t encourage non-National Jewish IPF’ers to enroll in their IPF Care Center Network program. For “plain folks”, they’re pretty expensive.

      Ergo, I’d question whether this webinar is open to all comers.

      FWIW…

      Oh, and as an aside, I never got any help from your admin. in securing a newsletter-specific signin…so I’m still using the less desirable and less secure Facebook login.  FWIW 2.0 🙂

    • #12934

      Hey Jay,

      Thanks for writing, its great to hear from you! 🙂

      Yes, I noted the intended audience before posting the webinar information here but thought I’d share it in the off chance someone might be interested, even though they don’t fit the description of intended audience. Sometimes I like to listen in on webinars, online courses or medical YouTube videos simply because I find them interesting, or maybe it makes me feel super smart if I am pretending I understand haha who knows! Someone might benefit from joining the free webinar, and people may not as well, just thought I’d share the details. If it isn’t interesting or the registration page stops them then we tried, I suppose.

      I’ll ask our tech team again about using an alternative login. Is this for signing into the forums, or signing up for the newsletters? I suspect you mean the latter but I wanted to clarify first. I would imagine you should be able to just use your email as a sign in option, but I do know sometimes people have issues with this. Once you clarify for me, I’ll see if I can find any answers for you!

      Chat soon,
      Charlene.

    • #12953
      Jay Turbes-s
      Participant

      Hi, Charlene

      OK, what’s this — newsletter, right? If not, then I don’t get a newsletter anyway and this is a forum.  Whatever this is, I can’t get a confirmation msg. when I try to enroll here using my email. It just keeps saying “nope, you need to re-request a confirmation msg.” … etc. I’d like to stop using Fb login since they’ve shown themselves to be less than security worthy.

      Cheers!

      J. in CO

    • #12958

      Hi Jay!

      I have passed on your message to our tech team and am seeing what I can find out for you. I believe there should be an option to just use a username or email to sign into the forums, as opposed to facebook (as I don’t use my Facebook to log in) so hopefully we can figure out how to do that. I’ll keep you posted!

      Hope you’re having a great day 🙂
      Charlene.

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