Being part of a community is an essential part of living well with Charcot-Marie-Tooth Disease, and we have a number of ways for you to interact with others in the same situation.
For Members, we have a “secret” Facebook group – this means only people that the admins add to it (ie, Members only) can be a part of this group – once you’ve joined, and have paid your subscription, you’ll be sent an invite to join this group. If you don’t currently use Facebook, we will provide step by step instructions as to what to do, so that you can make the most of this group.
For anyone out there on the web, we have an active and informative Facebook page, which can be found at www.facebook.com/cmtuk and we have almost 3500 “likes” from all over the world. We tend to use this for Awareness matters, interesting posts relevant to everyone, and as a forum for encouraging our lovely fundraisers.
But pages are difficult to have proper discussions with others on – so we also have an Open Group for anyone to join – www.facebook.com/groups/cmtuk – allowing lots of opportunity to discuss and learn from others in your situation. Again, the group is available for anyone to join, although we would like it to be primarily for people in the UK. It is “closed” so that you can discuss issues without them being shared on your timeline. We do police it to try to ensure the spammers are kept at bay, but sometimes its a difficult job! If you have any concerns about the group, you can email Karen on firstname.lastname@example.org or Kim on email@example.com, who are both admins of the page.
We also have groups for Wales, Scotland and the whole of Ireland:
Whole of Wales – https://www.facebook.com/groups/CMTUK.Wales/
Whole of Scotland – https://www.facebook.com/groups/CMTUK.Scotland/
Ireland – North and Republic – https://www.facebook.com/groups/CMT.Ireland
You can also find us on Twitter – @CMTUnitedKdom!