Yesterday I travelled to London with a colleague to meet with Andrew Schorr of Patient Power. We had a great meeting. we look forward to working with him on global patient programs in CLL, especially in Europe with the support of advocates in France, Germany, Spain and Italy.
Andrew you’re an inspiration. Andrew also featured in an event the evening before in which with others he describes and explains the impact on him and he to it of on-line information and support. Good and bad and explores with a panel how on-line support is developing for patient groups within social media.
This is a link to the show: new.livestream.com/smwlondo...
Having been inspired by Andrew I have set up a Twitter facility to sign post people here , It will be updated using bit posts of latest CLL news and current information for the interested and links to help social media users find us.
Several have joined us here at HU through links provided in CLL Facebook groups posted by their members My own new twitter page is focused on CLL.SLL and our community twitter.com/SupportCLL
As part of the on-line CLLSA development we are exploring creating CLLSA signposts to allow CLL/SLL patients who are social media users to find us.
[this post has been edited today 28/09/2013] Following the alert about protecting anonymity please note that other twitter users can see who you choose to follow unless you create a private list. Rob explains this below.