Campaigns

Raising awareness of Inherited Metabolic Disorders is one of the biggest challenges that we have. With hundreds of 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 to 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: www.samebutdifferentcic.org.uk

The Rare Project introduces children who have rare conditions, and shares their stories of the impact that their rare condition 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 – Tyrosinaemia

 

 

 

 

 

 

 

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.