Submit your community for a weekly breakdown


(Colleen Young) #23

Hi @rebeccabraglio, I just took a peek and wanted to say that I really like the wording you use about your other social networks. “Socially accessible. We’re active on your social network.” So refreshing from the usual, connect with us or whatever.

I look forward to exploring your community more, but I have to get back to mine for the moment. :slight_smile:

(Rebecca Braglio) #24

Thanks so much!!!

It’s funny - I’ve just come into the company and I’m so focused on what needs changed/improved/modified that I’m missing those kind of positives. And it would help to have those kinds of positives to be pointing out when I’m also sharing critiques!

(Rachael Reilly) #25

Hi Robert, I volunteer for Cystinosis Ireland and look after our Twitter and Facebook accounts. I’ve only had a quick look at your community but will definitely take the time to do a deep-dive and offer feedback. On a personal note I just want to say that I admire the concept and what you guys are doing!

(Robert Pleticha) #26

Hi Rachael,
Thanks for the reply. We also have a cystinosis community on RareConnect, but its not active at the moment. The idea is to create international communities for different rare diseases and to offer human translation to help breakdown language barriers so people can work together and those that don’t speak English aren’t left isolated.
As time has gone on, we’ve realized RareConnect works better for less organized groups and the very rare diseases. I think cystinosis patient groups are well organized nationally and so don’t see the need as much for RareConnect.
Any feedback you have will surely be taken into account, we are doing a large redesign this year and just starting work with a design agency to help try to make RareConnect simpler and more user friendly and intuitive. My email is
Have a good weekend!

(Rachael Reilly) #27

What a wonderful mission Robert! I totally agree that Cystinosis patient groups in general are well organized. I know of other groups and diseases that really struggle with this though and I can only imagine the affect on patients and families. I know a lot of conversation on our private groups is around translating medical terms into easily digestible language too.

Enjoy the weekend :slight_smile:

(Paula Munch) #28

I would love feeback. We are merging two of our websites into one - so the community is moving from being behind a wall as a member to going public. I am afraid of losing the connection we had with paid members.

(Richard Millington) #29

Thanks for submitting these. It’s been pretty fun for us to work through some of these communities.

What I’d like to do at this point is do a breakdown of some of the larger online communities out there over the next few months and see if we can put some pretty standard benchmarks in place. If you want to nominate some of the communities you participate in (but aren’t your own), feel free. Can’t promise we will accept every nominations, but a good diverse bunch should be really interesting to see.

I think it will be really interesting to dissect some of these and hopefully put some standard benchmarks in place about how they work. I’d love to create something similar to UserOnboard here.

If you submitted your community for review and we didn’t get round to it, try and do it for yourself and post the results as a separate posts. We will provide any guidance we can there and it will be really interesting to see how the group as a whole progresses here. If you have any questions, drop us a line.

(Richard Millington) unpinned #30

(Sarah Hawk) split this topic #31

A post was split to a new topic: Looking for ideas around growing & evolving

(ForumSentinel) #32

Not sure if it would be worth doing due to how our community is structured, but I’m interested, and we’re still one of the largest. I basically only control the management/day-to-day aspect of the community, anything requiring coding, server work, or programming is handled by another department of the company. Major changes often require executive approval.

(Rachael Reilly) #33

Hi Robert, a question came up at our AGM yesterday and I thought you might be able to give some advice. We have a closed Facebook Group for our Irish families to connect and offer each other support. Members of our committee (mainly our support group) also reply occasionally as ‘Cystinosis Ireland’. Should we have a disclaimer that we are simply offering advice? Thank you!

(Dean Samways) #34

Hello all,

Is this still a thing? If so, I’d love to hear your thoughts on the Which? Conversation community:

Thanks very much,


(Sarah Hawk) #35

Hey Dean,
Good to see you back!

I gave up doing these a while back because things got busy and they take a lot of time.
We did have plans to formalise this into something in the future, so watch this space.

(Dean Samways) #36

I figured this may be something that might be a little difficult to scale. Amazing service if you can manage it though. Will keep my eyes open in the future.

(Richard Millington) #37

Thanks @dean.samways we might come back to it at some point.

It was more of a challenge of what to do with limited resources and not cannabalizing some of our consultancy work really. Very open to expanding the concept though.