I'm almost in tears, this has been such a touching experience.
I came to find Rare Guru through an article I read, and really thought nothing of it at first besides it being a neat idea and my own experience in tech and frustration about my medical issues.
I've had a suspicion that I had something weird aka rare that was not being diagnosed. Well thanks to the article which feature this app and its founders, I asked for a lab test that probably nobody would ever have ordered because I don't fit the clinical profile. I mean, almost not at all.
Turn out it's abnormal and highly suggestive of hypophosphatasia.
There are 10s of thousands of people using this app, and the founders took time to talk to me through the app and even a video conference and provide me with lots of info since it is something they are familiar with.
My mind is truly blown. I finally have some answers for decades long questions that I probably would not have ever found was it not for that article and the story of Heather, her daughter and the app they created.
I know this review isn't really about the features of the app, but since I work in the internet tech space, let me just say that it's not the features and functionality or lack of bugs that make a great app.
It's whether it is effective for its intended purpose. I am one fretful individual who has proved that truly is the core of this app. It has been proved effective and I get to join an exclusive club of about 500 out of 330,000,000 people with this diagnosis. Let that % sink in. I'm off to buy a lottery ticket now.
Thank you, Heather, Bennett and family!