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RareShare July 21, 2008

Posted by tomography in Nuclear Medicine.

I would like to provide yet another little space on this blog for something that is not related to either Radiology nor Nuclear Medicine, but is something that everyone should be aware of : rare diseases. They are defined as rare because only 4-5 people in 10,000 are affected by either one of them, and thus they are not too popular amongst drug companies.


I have come across a website recently that might have great value for those affected by these diseases: RareShare.org. About their goal:

Due to the comparably low level of occurrences of individual rare disorders, there is often a lack of information and support for patients and their families. We’re working to change this.

All rare diseases featured on this website have a community on this website, 657 in total! Anybody can sign-up to be a member of a community even if they are not affected by the disease. Members can exchange information on the discussion forum, post online sources about their disease on the community page, and probably even contact their community expert when that function becomes available.

I signed-up promptly so as to become a community expert one day (I believe that anybody with some medical background may become a community expert after a little homework), and I urge all medical professionals and students to do so.

Further information:




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