UK: CML UK - Facebook Group

CONTACT INFORMATION:

1 Waters Drive

Sutton Coldfield

West Midlands,

England B74 4TQ

UK


Website: http://www.facebook.com/groups/282669575182337/#!/groups/282669575182337/

 

KEY CONTACT:

Nigel Deekes Administrator for the group

 

BRIEF DESCRIPTION OF ORGANIZATION:

I have set the group up for a more informal place to meet to discuss CML and gain help and direction from members, though their personal experience and knowledge, and to direct CML patients to web pages / sites that may assist. I found that other sites while excellent were not a place to share the day to day stuff, and felt a Facebook page would and should run along side other sites, accordingly we direct others to these as well.

KEY OBJECTIVES AND INITIATIVES:

Setting up on my 1st anniversary on 21st September 2012 we now have 122 members and growing daily. I have been in touch with Prof Steven O’Brien who runs the Spirit2 trial in the UK and he thought the group good and an idea, and indeed they were looking social media and so wants to use us to inform patients as and when of things, thus has issued our details to the 120 centres involved in the past few days I gather. We have been particularly beneficial I understand to those that have found us in early diagnosis, and so want to register the group for further exposure and to have access to the network of advocates. Really as mentioned above, I / we want to help other CML patients, it has surprised me by the lack of knowledge some have (not that mine is that extensive after one year) and advise given. Patients comment on the warmth of the group and assistance we have given.