Outputs From Study

• We have produced a new statistical method to produce growth charts for rare conditions in collaboration with medical statistician Professor Tim Cole(UCL).  Read our preprint here

• The lived experience of a parent of a child with a genetic neurodevelopmental condition. Read our preprint here

• Coming soon: How do parents use social media to help them navigate managing their child's rare genetic condition?

And more analysis underway so check back in for further updates.