Hi Matt, I've been inspired to start setting up something myself. Long story why, but in short I've got kids of my own around Bertrand's age (also, my own son is named after famous scientist and thinker). They were born healthy, and can't imagine going through what you all have.

Also, pre-software development, I did grad school in public health (lots of epi and biostat in a dept of inhl health) and briefly worked in health research. So I may be in a good position to help out.

I'm in the process of setting up something using Flask right now and will soon (next few hours) open source it on Github and open it up for contributions. I can't absolutely guarantee that I'll be able to maintain it long-term, but I can certainly get a forum, site, and member registry database up and going and open sourced. Hopefully in such a way that it could be managed by a non-programmers (I realize you have such skills but you obviously have your plate full).

Perhaps eventually it could bloom into a full registry of genetic data, pending resolution of privacy issues (maybe using something like dnasubway).

I'd really love to team with an established designer(s) on this. I can hack up a UI, but would be best to team with a designer(s). I'd also love to team up with other devs who are interested.

Would sociallyrare.org be an ok name for a social media hub for rare diseases? I went ahead and registered that name, but if you have any other suggestions/requests I'd love to hear them. Not sure if Socially Rare has the right ring to it.