One size doesn’t fit all – we understand a different approach is needed.

Our poem is dedicated to the people living with rare diseases and the researchers and companies who strive to find a better way.


The Journey

By Claire Williams

Confusion, fear, frustration – diagnosis at last – new hope, anticipation

Locating the small spread-out league of experts, following their vocation

Giving hope yet carefully managing such high expectation


In partnership with those affected, a close-knit expert mini-nation

A shared passion approaching it with grit, determination

A united voice spreading awareness, realities, providing education


And yet from those on this journey, we can all take inspiration

For they live their lives, approaching each day with renewed determination

Such perspective, a smile, joy, appreciation