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Online resources for PKD people

May 4, 2009

Online communities can be a great source of support and help for those living with illness or disability. So what’s out there for PKD people?

The Polycystic Kidney Disease Foundation has started an online community called Hope Square. It’s in beta at the moment, so go on over, join up and offer your constructive criticism. It looks a little bit like a Ning setup. It’s hard to tell how many members are from what country, but it seems mostly to be people from the USA at the moment from over 700 members total. Resources such as these grow in value the more people join and participate, so it will be interesting to see how it goes.

The Polycystic Kidney Foundation of the UK runs offline support as well as an online group/mailing list via Yahoo Groups: PKD_uk Yahoo Group.

Another Yahoo Group is PKD Care, which averages about 200 messages a month.

There’s a small forum for Europeans: EuroPKDfriends.

The site Daily Strength has lots of groups for all kinds of illnesses, including PKD. PKD @ Daily Strength has nearly 300 members and some moderately active boards.

And there’s quite a few PKD and other kidney-related groups on Facebook. I won’t list them all, just go there and search for polycystic kidney disease.

As for kidney disease resources that aren’t PKD-specific, there’s I Hate Dialysis. 🙂 And Bill Peckham’s blog Dialysis From the Sharp End of the Needle is also great especially if you’re on dialysis. I’ve found that reading forums and blogs like these has eased the fear of dialysis for me. When the time comes, I’ll be better prepared.

In Australia, we have the Kidney Health Australia organisation,  which has a “blog” on the site, which frankly to me looks more like a guestbook than an actual blog, which is a bit weird. They also have YAP Space, which I still haven’t received my approval email for, so I can’t tell you anything about it. Maybe a bit like Hope Square? or more like a regular forum? I know they’re probably just trying to prevent spammers, but having to wait some unknown period of time for an administrator to approve registration is a bit of a turn-away for an online community. People like to get in there and start participating.

There are a few Australian regional support groups but none seem to have an obvious online presence.

If you know of any other online PKD communities, comment and let me know!

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