The third in this series of Rare Diseases Public seminars is focused on the concept “Living with a Rare Disease”
Laura Eagn, Chair of Rare Ireland will address common and unique challenges of children and
their families experience of living with rare chromosomal disorders.
Anne Lawlor, Chair of 22q11 Ireland will be discussing life as a Rare Parent.
Julie Power will be addressing the day-to-day challenges of living with a rare illness.
Les Martin will discuss the importance of expansion of newborn screening
programme in Ireland.