We support over 500 conditions
We offer help to 195 countries
We support over 20,000 people
Latest news
Read our Thoughts into Action report
25th September 2023
We’ve released our Thoughts into Action report which was informed by research into identifying what good quality of life is for our communities, using a methodology that allowed our communities to speak, on their own terms, and for their stories to be meaningfully used to affect direct change.
Interested in reading our report? Click the button below:
The importance of hyperammonaemia awareness
14th September 2023
We’re supporting measures to prevent hyperammonaemia following the death of Rohan Godhania, who died as a result of consuming a protein shake whilst living with undiagnosed ornithine transcarbamylase (OTC) deficiency.
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Meet Megan: Spotlight on the University of Essex
1st September 2023
Megan, a previous placement student has been featured in a national campaign highlighting the value of university!
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