Raising awareness of Inherited Metabolic Disorders is one of the biggest challenges we have.  With hundreds complex and varied disorders we are constantly searching for new and creative ways to give families and patients the opportunity to have their voices heard and tell their story.

Same But Different: The Rare Project

We teamed up with Same But Different; a community interest company that uses the arts to raise awareness of disabilities and counteract prejudice.  It encourages people to look beyond first impressions and provides signposting to support organisations.

For more information about Same But Different, please visit:

The Rare Project introduces children who have rare conditions, and shares their stories of the impact it has on them and their families.  The photographs have been displayed in a series of high profile exhibitions including the Houses of Parliament, and attracted worldwide media coverage.

Meet some of our special families who took part in the project

Alex – Leigh’s Disease
Alex – GA1
Maddox – HPP
Zakiyyah – Tyrosimaemia








If you would like to be involved in any of our campaigns to raise awareness and encourage others to look behind rare diseases please get in touch.