Poll

If There Was an On-Line Face to Face Support Group, Through Skype etc, What Would Be the Best Option for Organizing It?

Base it on Geography
0 (0%)
Base it on Type of Amyloidosis
1 (100%)
I don't think an On-Line Patient Support Group is a Good Idea
0 (0%)

Total Members Voted: 1

Voting closed: July 14, 2018, 09:46:22 am

Author Topic: Virtual Patient Support Group via Skype Etc  (Read 3778 times)

Mark McConway

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  • Posts: 74
  • Patient - AL Amyloidosis - Diagnosed 2011
  • Reason for joining: AL Amyloidosis Patient (Diagnosed at 47)
  • Diagnosed: March 2011
Virtual Patient Support Group via Skype Etc
« on: July 07, 2018, 09:46:22 am »
I've been reading a number of comments from people who haven't had access to a local patient support group and wondered if it might be an idea to create a 'virtual' group that people could connect to on-line, face-to-face, on an occasional basis.  It also opens up the opportunity to connect with patients in other parts of the world.

Our Scottish Amyloidosis Patient Support Group has been growing over the last few years and the majority of us make it to most of the meet-ups.  We know how genuinely supportive and beneficial these groups can be but access to them, whether through illness or geography makes a virtual solution a decent substitute in my mind.

However, it might be that the numbers of people involved, across the country, would make such an initiative impractical.  Would be interested to get views.

Mark
« Last Edit: July 07, 2018, 05:59:20 pm by Mark McConway »

georgeturner

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  • Posts: 126
  • Reason for joining: Patient Familial ATTR amyloidosis
  • Diagnosed: 13 May 2014
Re: Virtual Patient Support Group via Skype Etc
« Reply #1 on: July 20, 2018, 09:42:25 pm »
Mark,
Now that my mobility is greatly restricted I have missed getting to some of our meetings. Distance, mobility, dexterity and health stop many of our members getting to our meetings. Any way to keep the group together and in touch would be great. Miss the support.
Hope you and all the group are all doing well.
For others with no groups in their area and who would like the benefit of some support, any way of providing this would be great.
Slainte Mhath,
George