Welcome to

Join us as we create a dictionary like no other. We want people in the rare disease community to create and submit entirely new words to describe what life is like living, caring and working with rare diseases. Our goal? More relevant and relatable vocabulary for rare diseases. Because with experiences so unique, sometimes regular words just won’t do.

About the project

Find out more about why we’re making the dictionary.

Our word gallery

Want inspiration? See what
words others have made.