GLUT1 Deficiency UK

We are a small but dedicated team of five parents from across the UK and Ireland each of us having a child/young adult with GLUT1 Deficiency. We have come together to provide compassion, support and education in raising awareness of this rare condition. For many years, families with GLUT1 Deficiency relied on support from the GLUT1 Deficiency Foundation in the US and from Matthews Friends Ketogenic Dietary Therapies Charity here in the UK. Following the 2nd European G1D conference in 2018, it became clear that a dedicated UK charity was needed to support the growing number of parents and carers of children and adults being diagnosed with GLUT1 Deficiency. After this meeting a group of parents got together, and after three years of hard work, GLUT1 Deficiency UK was launched. We have now achieved Charity Status throughout the UK and have actively been raising awareness by attending medical conferences such as the British Paediatric Neurology Association, The European Paediatric Neurology Association and The Royal College of Paediatrics and Child Health. This has given us the opportunity to raise awareness and increase understanding of the complexities in diagnosis of GLUT1 Deficiency. The importance of early diagnosis and the introduction of the Ketogenic Diet as the ''gold standard' treatment.

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