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. http://www.findacure.org.uk/wp-content/uploads/2016/10/Congenital-Hyperinsulinism-Findacure-rare-Disease-Perspectives-2016.pdf
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:
https://ojrd.biomedcentral.com/articles/10.1186/s13023-018-0867-6
