Rare Diseases Public seminar focused on the concept “Living with a Rare Disease”
- 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.
Please do save the date and take time to join us for a promising discussion!
Remote Webinar: All welcome
25th of February 2021 (12.30-14.00)
Avril Daly: Vice-President of EURORDIS
Dr Emma Nicholson: Research Fellow, UCD Centre for Interdisciplinary Research, Education and Innovation in Health Systems (UCD IRIS), UCD.