Author Topic: Forum feedback and suggestions  (Read 22162 times)

georgeturner

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  • Reason for joining: Patient Familial ATTR amyloidosis
  • Diagnosed: 13 May 2014
Re: Forum feedback and suggestions
« Reply #30 on: March 02, 2015, 11:14:25 pm »
It looks like only moderators can create new boards. It would be good to have specific ones for each type of Amyloidosis I was looking to start one on AL Amyloid - what do folk think?

Hi Judith, welcome and thanks very much for your excellent suggestions.
When I set up the forum I intended to have boards for each type of amyloidosis.
But after some consideration and discussion, I decided to start off with just have one general discussion board until we get some discussions going and see how the forum progresses.
There may well be topics of shared interest between people with different types of amyloidosis.
Once the forum becomes active and populated, we can reconsider and divide up the existing threads if it seems sensible.

I think it would be good to have boards for each type of amyloidosis when the forum progresses. It would make it easier for members to get to the areas they are interested in. However, I do think that access to all the boards should be available to all members regardless of type of amyloidosis as so many of the symptoms and much of the information and advice given applies across all types.
Slainte Mhath,
George

Lesley

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  • Posts: 177
  • Reason for joining: Amyloid patient (AL)
  • Diagnosed: December 2012
Re: Forum feedback and suggestions
« Reply #31 on: March 05, 2015, 04:00:42 pm »

Morning All & Miriam


I wonder if its worthwhile sending a generic email to all the people on the forum or not yet registered, just reminding them of this facility we now have and maybe regular reminders/updates generally so it gets people actively involved in using the forum.


Lesley
« Last Edit: March 05, 2015, 06:41:45 pm by Miriam Vered »

Miriam Vered

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Re: Forum feedback and suggestions
« Reply #32 on: March 05, 2015, 06:44:28 pm »

Hi Lesley,

Thanks very much for your suggestion.


I think it's a good idea to send updates about the forum discussions to everyone who has registered. I will start doing this soon.
I agree that it would be nice if a greater variety of people were to participate in the discussions. But I think that the number of views for several topics show that a lot of members read other peoples' posts even though they prefer to "lurk" rather than contributing.
In the meantime, the nurses at the NAC are mentioning the forum to patients in clinic, and the latest NAC newsletter also mentioned it prominently. I may include an article on the forum in the next newsletter as well.
So I hope that gradually we'll get the word out there and get wider participation. But even if not, I definitely think that your posts are helping far more people than just those who respond, so thank you very much for being so active and please keep it up.


Miriam




patpinchin

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  • AL - extensive in skin. mouth + palatal nerves '04
Re: Forum feedback and suggestions
« Reply #33 on: March 05, 2015, 07:55:10 pm »
I think this will be a very gradual process. Those of us who are in touch with patients who are not participating so far must encourage them and tell them what a great resource this is and how much it is helping others. :)

 I wonder if the NAC nurses also have a brief handout with the link plus a few details to give patients?
This would be a prompt for patients once they arrive home.
 Would it be an idea if the handout also gave an example of a helpful post and reply providing the senders agree?
Pat

Miriam Vered

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Re: Forum feedback and suggestions
« Reply #34 on: March 06, 2015, 05:54:31 am »
Good idea Pat.
I'll discuss it with the nurses