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Does anyone belong to an allergy fb group?

(13 Posts)
JoleneB Thu 13-Dec-12 14:49:12

Okie, I just realised you said "I am in" not "I am" confused sorryblush you are more than welcome to come and join CMPAsupport though, as is anyone else grin

JoleneB Thu 13-Dec-12 13:40:27

oakie, have I spoken to you go the past about after eight mints, my group is CMPAsupport? I would like to talk to you about a cooperation between our groups! Your welcome to come and join us smile I put the link on another thread on here or you can find it from our page or via Twitter (your following uswink )

okiecokie Thu 13-Dec-12 11:57:37

Freefrom that is spot on. I am in the Anaphylaxis Campaign FB group and I would welcome some more "discussion" however I see this could be difficult to manage. I am in several FB groups but would welcome being in a allergy one.

JoleneB Thu 13-Dec-12 08:07:42

Thanks NotDoris grin I've joined mumsnet to try and get more mummy's to fill out the playgroup questionnaire wink anyone is welcome to join the group, I'll put a link up when I can get on from the lap top, if I do it from my phone you end up trying to log in to my fb account!!

NotDoris Wed 12-Dec-12 18:38:01

Sorry, hit send without realising!
I was just going to say that I've joined one, then saw jolenes name here- it's her group and it's fab!!

NotDoris Wed 12-Dec-12 18:36:41

I was just going to say that I've jo

JoleneB Wed 12-Dec-12 08:14:56

I couldn't find one that was relevant for cows milk allergy that was any good, so I started one myself! started in April this year with 8 members, now over 180members, posts very regularly, so much so I had to create a website to hold all the information! I don't trust any of the formula companies face book pages really, they aren't very supportive envy

freefrommum Fri 30-Nov-12 21:54:35

I am but have to admit I don't go on there very often. I think they need to focus on their social media more and try to engage with people rather than just posting information or trying to direct traffic to their website. With social media you have to think 'why would anyone want to engage with our Facebook page/Twitter feed etc?' & 'what's in it for THEM?' rather than 'what do WE want out of our Facebook page?'. Too many organisations try to use Facebook just to get more people to visit their website and this is a big mistake as that's not why people go on facebook, they don't want to be pushed towards websites, they want immediate info and immediate engagement. Doesn't mean they shouldn't link to specific pages on their website when relevant but that shouldn't be the main focus. Try to get people talking, invite discussion. This can be scary for some organisations and does need to be managed properly to ensure that any abusive or offensive material is removed asap but it is the best way to really get people involved.

babybarrister Fri 30-Nov-12 11:42:51

Is anyone on here on the anaphylaxis campaign fb group? Do you have any good ideas for improvement? I am happy to relay them back to them -- puts on bossy breaches--

Sheilsie Wed 28-Nov-12 18:16:57

I joined one quite recently (did a search for 'food allergies') but it's not that good - only a post every couple of days and the posts that do appear aren't that relevant to my circumstances. I find it much more useful on here when I get a chance to come on!

babybarrister Tue 27-Nov-12 21:36:18

Anaphylaxis campaign have a fb group and it is moderatedgringrin

abigboydidit Mon 26-Nov-12 21:00:12

Not really. DS is allergic to dairy and eggs so I joined a vegan group instead and it's great for getting tips about unexpected supermarket finds!

OHforDUCKScake Mon 26-Nov-12 10:31:50

And find it helpful?

I belong to one and it was very helpful but now a couple of posters have made it a little strange.

I wondered if anyone here belonged to one?

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