About me
I’m Danny Englander. I was recently diagnosed with two rare diseases, myasthenia gravis and rippling muscle disease. I’m also experiencing as of yet unexplained neuropathy in my feet, toes, glutes, fingers, and hands as well as extreme pain. Diabetes, metabolic, and vitamin deficiencies have all been ruled out as well as a negative CASPR2 test and a negative Sjögren’s test. Upcoming is a chest CT with contrast and a second EMG. I am also hoping for a lip biopsy and a skin punch biopsy but of course one step at a time. 🙂
I built this application with Claude AI and Claude Code, often from my phone without typing a word, using Wispr Flow AI for dictation connected to Claude Desktop and my local development environment. It still amazes me that, in this age of AI, I can build something like this while also getting the care and rest I need. I remain hopeful. If you’d like to learn more about this site and how I built it, or if you have any other questions, feel free to contact me.
What this is
Rare Zebra is a prototype search interface for looking up rare diseases, built with Astro, Tailwind CSS, daisyUI, and Pagefind for instant client-side search.
It currently covers a sample of the diseases catalogued by Orphadata, Orphanet’s free, open-access data service, not the full catalogue. Not finding a disease here doesn’t mean it isn’t real or rare; it means the sample hasn’t reached it yet.
What this is for
This project exists to demonstrate a fast, faceted way to search structured rare-disease data: by name, synonym, or symptom, and filtered by body system, inheritance pattern, age of onset, or rarity. It’s a working interface built on real data, not a finished product.
What this isn’t
This site is not a substitute for medical advice, and it isn’t affiliated with or endorsed by Orphanet. It’s an independently built interface over data Orphanet makes freely available under a CC BY 4.0 license. If you or someone you know is dealing with a rare disease, please talk to a qualified healthcare provider or a patient organization for that condition.
Questions or feedback
Use the contact page to get in touch.