In order to care for the health and wellbeing of a person with a rare disorder, we also need to focus on wellbeing for those around. In Norway, some of the Centers for Rare Disorders also have focus on the family members such as parents, siblings and grandparents and this webinar will concentrate on them.
Date: Tuesday, 8 April 2025
Time: 17:00 – 18:30 (CET)
PROGRAM:
Welcome and Introduction
- Speaker : Heidi E. Nag, Special Educational Advisor, PhD
- From: Frambu Resource Centre for Rare Disorders, Norway
A presentation of Frambu and the Norwegian model
- Speaker : Kristian Kristoffersen, director at Frambu
- From: Frambu Resource Centre for Rare Disorders, Norway
Parents and caring for the caregivers
- Speaker : Torun Vatne, Doctor of Psychology
- From: Frambu Resource Centre for Rare Disorders, Norway
Siblings
- Speaker : Krister W. Fjermestad, Doctor of Psychology
- From: Frambu Resource Centre for Rare Disorders, Norway
Grandparents – a double grief
- Speaker : Tonje Elgsås, Psychologist
- From: Frambu Resource Centre for Rare Disorders, Norway
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