“Much like a unicorn, just because you haven't met someone with your disease, does not mean they don't exist...”
Welcome!
The goal of this website is to help you locate and use the many resources that are available to assist you in finding others with a similar genetic diagnosis, specifically those that have not been previously described in the medical literature. We call these N-of-1 diagnoses.
Getting this sort of diagnosis can make you feel confused and isolated. You are not alone!
Experience shows that connecting with other individuals or families with the same or a similar condition can be extremely helpful as a source of emotional support and medical advice.
Other families may also help point your doctor toward new therapies and better information about prognosis.
You can learn about creating your own N-of-1 community by clicking on any of the tabs above.
Here are some suggestions to get started:
Check out our "Example Case Story" first, as it is featured in many of our how-to guides.
Use the "How-to Guides" to connect to others through social media and matchmaking networks. Each offer a unique way to connect with other N-of-1 individuals.
"Additional Resources" are there to give you an idea of some other helpful websites.
Unfamiliar with the lingo? Check out the glossary!
