RareGuru: Rare Diseases

Wow I love RareGuru. You select your diagnosis and or symptoms if you wanna list your symptoms, then you get a selection of connections based on the information in your profile. You can make the list of your symptoms public or private and there’s even a symptom tracker. There’s no newsfeed or posting. Once you send a connect request and it’s accepted you get to talk one on one. So it’s like a community of people who share your diagnosis or symptoms with one on one emotional support through those good and bad days. I’d highly download RareGuru cuz here on RareGuru you aren’t alone. If someone doesn’t share your diagnosis or symptoms that you know of, then download RareGuru and I promise there’s people out in the world. You just haven’t met them yet but on RareGuru you will.

This is such an inspirational app. I love the idea of bringing together isolated individuals and groups in the rare disease community to share and learn in a positive environment. This is what the internet was made for! After reading the founder’s story and some of the other shared stories on the blog, I’m really excited to see how this app grows. This has potential to be life changing for those of us who care for others or who suffer from a rare disease ourselves.

I wish getting a diagnosis was as easy as using RareGuru. It was easy to set up and start matching with others. I have been diagnosed with several chronic conditions (all also in the app) but only recently diagnosed with a rare genetic disease after several family members were diagnosed. Turns out I’m the real patient zero 😆 now all of my other common conditions and symptoms are starting to trace back to my rare diagnosis. It took me 66 years to get this diagnosis and I’m glad to have this app to connect with others like me. I feel less isolated and more hopeful.