I'm delighted to announce that the RareShare site has been revived and is now operational once again!

The site was down for over 9 -- yes, an incredible N-I-N-E -- weeks, and were it not for the intervention of two highly qualified volunteers I recently recruited to help out, including a member of this SCLS community, the RareShare site might well have remained offline for another 9 weeks.

I am getting to the bottom of the mismanagement involved on the part of our host, the RareGenomics Institute, to make sure something like this never happens again.

Welcome back,

Arturo   

So glad to see it back online!   Thanks for pushing it along.  I wouldn't want to create any kind of "too many chefs" situation, but if you have the contacts, I'm always willing to help out if needed and able, I work with web applications (many legacy) on a daily basis. 

Thank you very much, Arturo.

Peopla like you are the real benefactors of humankind.

What a joy to see the site up and running.  Thanks to everyone who took care.

Ariel 

Thank you Arturo for responding to my email when I was having trouble registering here.  Thanks also to Cristina for letting me know this forum even exists. I fully appreciate the value of patient forums like these as I was a leader of the Gluten Sensitivity/Celiac Disease forum at MGH BrainTalk forum in the early 2000s and later a co-owner of a forum we called Gluten Free and Beyond.  BrainTalk forums went down for 8 months and sadly when it finally got back online after such a lengthy period it was never the same. People had moved on to other forums or created their own and never returned. So...Thanks also to the technical wizards here who addressed the technical problems and got this up an running in 8 short weeks and fixed the registration glitch I was running into. 

I will read back posts and get acquainted here and post my medical history and SCLS story soon. I was just diagnosed with SCLS last week at Mayo Clinic. I've had six episodes over 4 years, the last one triggered by Covid. It was this last episode that put me in the hospital for a week that prompted me to seek out a consult at Mayo for answers. I'm so grateful to finally have an explanation, a diagnosis, and a treatment plan.

Cara