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Welcome to our new home

aporzeca Message
24 Mar 2017, 01:49 AM

RareShare was co-founded (and built from scratch) in early 2008 by two wonderful, idealistic men in their twenties named David Isserman and Eric Steel, on the thought that there should be a better way to bring together patients, families and healthcare professionals to share knowledge and personal experiences about rare medical disorders.  They never intended to make any money from this site -- and sure enough, they never did.

I stumbled upon RareShare in May of that year and promptly started the SCLS community, and over the past decade it has turned out to be the most successful virtual community within RareShare -- but then, that's my opinion.  Indeed, I measure success not just by the relatively large number of members (over 300) we have attracted considering that SCLS is ultra-rare, and by the over 350 informative discussion topics we have generated, but because we have definitely improved and actually saved many lives -- not just my own -- by posting very useful information on diagnosis, management and therapy options for SCLS.

In 2014, Isserman and Steel transferred the rights to RareShare to the Rare Genomics Institute (RG) and moved on with their lives.

RG is an international non-profit that provides access to cutting-edge research technologies, physicians, and scientists across the globe. By providing an expert network and an online crowdfunding mechanism, RG helps families pursue personalized research projects for diseases not otherwise studied. RG was founded by Cheng-Ho Jimmy Lin, MD, PhD, MHS, whose day job is to be the Chief Scientific Officer (CSO) at Natera (NASDAQ: NTRA), where he is leading the development of new diagnostic technologies for cancer.

From Day One, the folks at RG committed to building a new electronic platform for RareShare, because the site was antiquated, limited in its functionality, and was stagnating and prone to failure because it was written in an obsolete code that fewer and fewer people knew about. It took more than two years but they finally did it -- all on the back of volunteers, by the way.

As you may have noticed, there are still some bugs in this RareShare 2.0, but they are being addressed.  For instance, the useful Disorder Resources section had not made it through the migration from RareShare 1.0, but it's now there and I've just updated it to reflect the latest (two 2017) publications on SCLS -- scroll down to the bottom and see for yourself.

Also, the way it's been set up, we won't be getting immediate notifications of new posts; rather, emails will go out after midnight EST each day alerting us to new material -- like this Discussion Forum topic, I hope.

On the other hand, there are great new functionalities.  Now you can email another RareShare member directly, rather than posting a general message under Discussion Forum in the hope of reaching the intended party.  Also, you can now search for information across the site, e.g., you can search for "headaches" and you will see entries on headaches from all kinds of communities beyond our own.

Anyway, welcome to our new home!


Beverley Message
24 Mar 2017, 11:59 AM

I am so pleased i found this site. I am learning so much and my consultants are listening, although i am finding this illness is so rare that no one knows what to do with me when im really poorly. I am curently out of control and having small attacks that are keeping me in bed!! Thank you so much for all the hard work and for everyone who shares their experiences. 

Kimmieroumayah Message
15 May 2017, 03:09 PM

Wow!   Surprised by the new site! 

So much more information and medical terms that I will have to learn.