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Living with a Rare Disease

Rare Diseases Public seminar focused on the concept “Living with a Rare Disease”

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February 25, 2021
Remote public webinar - please register at the following link:
12:30 - 14:00
Free of charge - all welcome

All welcome.  

  • 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)

Please register at this link for this living with a rare disease webinar



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.


Event Organiser Details
Name AJ McKnight
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