Rareshare, a community site for people with rare medical conditions, has shared some of it most recent growth data with us and the results are impressive. Since launching over the summer, the site has grown each month by between 35%-50%, and now has over 700 communities associated with different disorders. Given the nature of the site, the numbers are bittersweet, but it’s nice to know that so many people are finding others they can connect with.
Vistitors to the site are invited to contribute information and their personal experiences regarding each condition, and are also able to make contact with other users that are facing the same issues. Most communities offer a description of the condition, along with links to relevant websites that contain more specific information, and there’s a forum where the users can collectively give each other advice.
Rareshare says that it has been collaborating with the National Institutes of Health and the Canadian Organization for Rare Disorders, which are helping it gain traction in an incredibly crowded space (most other medical sites are focused on more common afflictions). It’s usually good to see healthy competition, but this is one case where consolidation would benefit the users – hopefully RareShare (or something like it) can establish itself as the de facto web portal for rare diseases.
That said, we should also note that communities focused on some rare diseases have already formed either at standalone sites or on larger health networks, so any readers looking to find a community focused on a particular disease would do well to do some searching beyond RareShare.
Thanks Number one rareshare
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http://tinyurl.com/4rdhmc
Because when we all unite, anything is possible…
Thank you so much for bringing this to the the larger audience. I suffer from a rare genetic disorder and never thought that such a thing existed. Thanks again and God bless you.
Good idea, but not so great when your customer base keeps dying off.
I don’t know of a site that doesn’t have customers that don’t die. =(
But yes, I see your point. I’m sure there will be many doctors and researchers on the site as well.
Interesting. It will be interesting to see how they expand.
Jason,
Thanks for the nice write-up!
David
david@rareshare.org
Please feel free to visit my blog at http://www.isla...cb.blogspot.com
BULLSHIT.
Where is the “Report Comment” Tab/Button ?
Get rid of that idiot above who’s spamming………thick F***in tosser.
I thought you guys at TC do not tolerate spam. What about the Chinese idiot spamming all over your site?
Hello, anybody awake out there?
I visit a ton of sites everyday and TC by far has the most spam. I don’t know why that is but it really reflects poorly on this site.
I have heard a lot of positive things about this being a great resource for people who can’t depend on a foundation or charity to provide links or discussion on similar medical rarities. With that said, however, it could face a lot of the same growth challenges that healthcare discussion boards faced early on, in that people are hesitant to discuss their medical situations openly, especially if it is something that makes them self conscious. Also, there are even more privacy concerns on the side of the healthcare providers; many docs are already hesitant to accept data from Microsoft Vault or Google Health. I know this is different, but using an open website as a medium to gather (and aggregate) healthcare information is not widely accepted in a clinical setting. Some of that has changed, but I’m not sure what the sustainability of this will be in a clinical application setting. It is a great connecting and information resource though that could provide a lot of peace of mind for many people. No doubt traffic and number of users will grow steadily in the near term.
My 14 month old daughter has a rare, terminal disease called Spinal Muscular Atrophy (SMA). In our experience with SMA, sites/forums such as these exist — even for rare diseases. After spending some time on RareShare, my opinion is that Ning.com provides a more robust forum and platform for information sharing. For example, http://www.SMASpace.com, which was started on the Ning platform. Just my $0.02.
I think this is a wonderful concept. As more and more people hear about RareShare, I’m sure it will become more useful than Yahoo groups or Ning. Organizations like the one above would be wise to contact RareShare and see how they can work with them while they’re still young and growing…
Why only for rare medical condition? I have a condition that is not rare but still has no solution in western medicine. I have heard rumours that there are some grandma solutions but have not found one that works for me. I would be happy to see what other people have found.
Also, I had allergies. Every morning my nose used to run and I would sneeze for hours. Doctors asked me to take antihistamine for the rest of my life. But fortunately one day I myself made a medicine for me. I was 50% improved in 24 hours and in a few weeks I was 100% cured – no medicine, life is so much better. I would like to share such solutions with others.
Anybody from rareshare reading?
hmm what happens when you are the only one with the disease..
in my opinion this is a great idea.. congrats to david..
patientslikeme.com is better and already established.
That’s completely different than this one…and lacks most diseases
any more better site?
I don’t know of a site that doesn’t have customers that don’t die. =(
thanxs post