14 Social Media Michael Rynne & Cheryl Petruk

So we’re gonna we’re going to talk about social media today so this might be very redundant for experienced groups and it might be great for new groups um you know great information but we’re certainly by no means am I saying I’m a social media expert I certainly know CLL does a lot a great job and a lot of.

Work in their social media but this is an opportunity just to give you an overview of what we think attracts patients and gives information to patients so certainly this is just something that we’re giving you is information so you know today in today’s world communication changes at Lightspeed it’s you blinken and there’s something.

New out there to communicate with people Facebook Twitter Instagram Google LinkedIn these are all different social media platforms okay the title and layouts which art what is social media and sherrilyn just said we use Twitter I suppose I speak a little bit about CLL Island and maybe you’ll.

Speak about the MP enzym there’ll be some stuff that the NPM community do that’s different than we all learn it off each other and actually all of us as an organization when we’re all watching what each other are doing but what in CLL Island obviously we did the Facebook page – Twitter’s the LinkedIn and the different forms of media kind of different people were kind of linking in with us on LinkedIn we had.

The doctors and we had the scientific community linking in on Facebook we had the patient community and on the Twitter kind of everybody is on Twitter and we’re actually I think Twitter actually was was maybe.

A good good for clicks killed a political space and and really what we found is when we when we we have a girl called Kara those are social media back in Ireland and she set up a system in place that we would look at post that.

Were coming from around the world and we will put them up on Twitter we would vet them ourselves and.

We pretty much knew because of our knowledge is CLL and the people that they were.

Coming from that this was relevant to our patient community we didn’t always get it right the Irish Cancer Society would maybe contact.

Us the other time and say oh I wouldn’t put that one up something that we didn’t realize was maybe more alternative I suppose we can talk.

Further about that about the pitfalls but that that’s really was what we will do if you want to so one of the things that I have found in my own organization is developing that social media strategy you can’t do everything and you can’t be that whole entire person who does everything so really focus on for me what I’ve done is I focused on.

Facebook Twitter and I don’t do Instagram for our Canadian group I just focus on the Facebook page and a private page so we have the private page for the.

Patients to have dialogue to one another and then we have our open page where we post.

As as well as for the MPN advocates Network we have a page which is open to the public and then we have a private group where we’re advocates can share amongst one another and it’s private it just stays private so really you need to think about the strategy your social media.

Strategy that you’re going to use and try and do that as best as you can and it does not have to be all-encompassing um email address is.