About the project

The World’s Rarest Dictionary is a project that aims to encourage others to listen, understand and reflect on the experiences of people affected by rare diseases. From those who actually live with a rare disease, to their family and friends, caregivers and researchers working across these areas. 

We aim to do this by creating new words and, eventually, an entire dictionary – The World’s Rarest Dictionary  – as a home for these words and their definitions. 

Our goal is to continue this campaign for years to come and truly capture the unique experiences that living with and researching a rare disease brings, eventually giving way to a new era of more relevant and relatable vocabulary for rare diseases.

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