In 2016, families of children with Congenital Hyperinsulinism and The Children’s Hyperinsulinism Charity participated in a Focus Group with Findacure to give their perspectives on living with a rare disease and the impact it has.

The report can be accessed here:

Findacure. Rare Disease Perspectives: CHI Focus Group Report 2016. 


A further study was published in 2018 citing the report for a deeper understanding of the cost implications of Congenital Hyperinsulinism within the UK.  This report can be found here:

The Childrens Hyperinsulinism Charity

The Childrens Hyperinsulinism Charity
Registered Charity Number: 1165562
Company Number CE005407

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