Rare Disease Day is observed on the last day of February each year to raise the public's awareness of rare diseases. There are over 6,000 rare diseases worldwide, and approximately 4% of the global population is affected by a rare disorder. This implies that rare diseases are indeed individually rare, but collectively common.

This month, we focus on the rare genetic disorder Prader-Willi Syndrome, which is caused by abnormalities on chromosome 15. Some of the core symptoms include an insatiable appetite, low muscle tone and behavioural and developmental problems.

In this episode, we speak with Emma and Rory Tierney, whose son, Henry, has Prader-Willi Syndrome. They share their personal story as parents of a child living with a rare disease. In the second half of the podcast, we hear from Gary Brennan, the National Development Manager for Prader-Willi Syndrome Association Ireland (PWSAI), as he shares his knowledge on the supports available for those with Prader-Willi Syndrome and informs us of exciting research in the field.