PF Online Support Group: Update
I hope this note finds you all doing well and having had a nice week.
Some of you have been asking me for an update on the status of a new initiative that BioNews is trying to see if we can bring to fruition, which is the online PF News support group. I’m happy to report that I had a great conversation with one of the staff at BioNews helping me with this, where we reviewed the data compiled from the surveys you completed on our main PF News page. Thank you for your time and attention when completing those survey’s, it really gave us some great data to work with!
It looks as though we are going to go ahead with this initiative, pending we can find a platform to use which will honour the top choice of how to offer the support group: a live Q&A with a facilitator and max number of participants. Our hope is that while we have to limit the number of “active”/contributing participants in each support group (to ensure everyone gets a chance to contribute), we can offer an unlimited number of observers to the online support group so they can be aware of the conversation taking place and hopefully ask their questions on the forum after the support group. The topics will vary, and be different for each support group, so it will be beneficial for you to take a look at the schedule (coming soon!) and join us for the topic(s) most relevant to your experience of living with IPF/PF.
More details: we hope to offer this on a bi-weekly basis, on a week day evening starting in early March. The goal will be to run it for 8 weeks at a time with varying support group topics for 3 months. Then, if it goes well and the platform we try out sufficiently meets the needs of our participants, we’ll run another group later in the year. The support group topics will come from the data you so generously gave us in the online surveys. Note: if you still want to contribute/complete that survey it is on our PF News main site, near the bottom of the page on the right hand side.
What do you think of the plans for this initiative so far?
Do you have any further information that might help us meet as many needs as possible for this project (recognizing it is impossible to meet the needs of every single person)?
I hope this provides some information / an update for those wanting to know more about this new initiative. I will be promoting it on our forums as soon as we have a few more wrinkles ironed out. Stay tuned and thank you for being part of this wonderful online community!
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