Stop looking. Start listening.

Hey listeners,

Glad you found me! I'm Susie, and I have a secret to share.

You wouldn't know it by looking at me, but I have a rare disease. Now, that's not the secret - I'm outspoken about my rare disease, because I know it's important for my voice to be heard. But like many of my fellow zebras, I look just like everybody else most of the time, and while my rare disease is a big part of my life, I don't let it define me.

So, how do you learn all about people like me with rare diseases? Here's my secret: you need to stop looking, and start listening. Let's get started.

Learn More

Keep up with me.

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:

  • Events
  • Drug research news
  • Social stories
  • And much more!

When you sign up to receive these insightful monthly reports, you will also get my 2019 Rare Disease Day Report as a bonus. I can't wait for you to read about all the social buzz we made together!