A little about me...

Welcome to my world. Dealing with a rare disease is hard... so I figured out a way to help! I know I'm not the only one talking about rare diseases, and I wanted to start listening to others who are speaking out as well. After all, knowledge is power.

My goal is to be a credible source of information about Rare Diseases, and to connect people working in the rare disease world to people dealing with rare diseases personally and daily. I work hard to collect all kinds of data from the digital space where people are talking about rare disease. Sharing these stories is a great first step - but those voices need to be heard! That's where I come in.

Every few weeks, I put together a report that informs you about what is going on in the social world of rare diseases, as well as how to listen and be listened to. This solution supports those looking for all kinds of information about rare diseases:

Are you as excited as I am to learn how better to talk to each other and listen to each other? Let's get this conversation started.

Talk to you soon,