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Topic
A Day in the Life of Living with a Rare Disease
Description
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.
Time
Feb 25, 2021 12:30 PM in
Dublin
Webinar is over, you cannot register now. If you have any questions, please contact Webinar host:
Justin Dawson
.
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Hi there, You are invited to a Zoom webinar. When: Feb 25, 2021 12:30 PM Dublin Topic: A Day in the Life of Living with a Rare Disease Register in advance for this webinar: https://ucd-ie.zoom.us/webinar/register/WN_-fvMML1yQLqY7LUPJjFlrg Or an H.323/SIP room system: H.323: 213.19.144.110 (Amsterdam Netherlands) or 213.244.140.110 (Germany) Meeting ID: 657 3059 5893 SIP: 65730595893@fr.zmeu.us After registering, you will receive a confirmation email containing information about joining the webinar.
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