The CoIN study is looking into how the coronavirus pandemic is affecting the lives of children with rare diseases living in the UK. The researchers are seeking participation from kids up to age 16 who have a rare genetic disease or neurodevelopmental disorder.
The initial survey should take about 40 minutes, and monthly updates afterward should take about 15 minutes. According to the study website, “responses will be rapidly fed back to charities and support organisations, and used to identify and provide better ways of supporting you both now and in the future.”
Click here to read more and to join the study.
