Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Wednesday, August 29, 2012

Let's Stop Storing Needles In Haystacks

Did you ever wonder what Dr. Benatar talked about at the May, 2012, ALSA FALS Summit?  Did you ever have trouble remembering if Dr. Scott talked at an ALSTDI conference?  Would you love to have a look at an ALS Registry presentation from 2008?  Does NEALS provide any presentations from its annual meeting?  Is there a Neuraltus presentation from last years International Symposium in Sydney?

Have you ever tried to find any ALS-related Powerpoint stack that was made available somewhere online after a workshop?

Industry groups that hold lots of conferences typically have great archives of presentations available in orderly manners online.  Members know where to go to find the presentations.  Groups share tools. They have great institutional history and know the value of access to information for their constituencies.

Unfortunately with ALS presentations, it's like trying to find needles in multiple haystacks.   Somebody stored the presentations somewhere (maybe) but it takes a relentless Google genius and countless hours to find some of them.

How about a common, co-branded, well-maintained spot that all of our ALS organizations would share to provide the Powerpoint stacks and other documents and media from their conferences and workshops?  That would make the information much more accessible and would greatly enhance its usefulness.  

Please?  It's all about the patients, right?

p.s. This also leverages resources.  Curing ALS is hard. This is not hard.

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