Master Thesis Online
Professionalization of the Kabuki Syndrome Parent Network. "A positive health & appreciative inquiry approach in learning networks."
van Golde, Maria 
Promotor(s) : Lambrechts, Frank
Date of defense : 4-Sep-2021 • Permalink : http://hdl.handle.net/2268.2/12827
Details
| Title : | Professionalization of the Kabuki Syndrome Parent Network. "A positive health & appreciative inquiry approach in learning networks." |
| Translated title : | [fr] PROFESSIONNALISATION DU RÉSEAU DES PARENTS DU SYNDROME DE KABUKI |
| Author : | van Golde, Maria
|
| Date of defense : | 4-Sep-2021 |
| Advisor(s) : | Lambrechts, Frank |
| Committee's member(s) : | Niessen, Wilfried
|
| Language : | English |
| Number of pages : | 44 |
| Keywords : | [fr] Strength-based change [fr] health care [fr] rare disease |
| Discipline(s) : | Business & economic sciences > General management & organizational theory |
| Commentary : | This paper formed the basis for the foundation of Kabuki Syndrome Foundation (citizens sciences) |
| Funders : | not applicable |
| Research unit : | This paper formed the basis for the foundation of Kabuki Syndrome Foundation |
| Name of the research project : | PROFESSIONALIZATION OF THE KABUKI SYNDROME PARENT NETWORK " A POSITIVE HEALTH & APPRECIATIVE INQUIRY APPROACH IN LEARNING NETWORKS" |
| Target public : | Researchers Professionals of domain Student General public |
| Institution(s) : | Université de Liège, Liège, Belgique |
| Degree: | Master en sciences de gestion, à finalité spécialisée en MBA (Horaire décalé) |
| Faculty: | Master thesis of the HEC-Ecole de gestion de l'Université de Liège |
Abstract
[fr] Welcome to our journey: a stepwise approach towards learning networks in rare diseases.
Working together on quality of life and utilizing the complementary knowledge of the expert by experience & professionals opens new doors. In this paper, I illustrate how we build capacity together via an Appreciative Inquiry approach with a Positive Health lens. This combined method enables individuals, organizations, and government to focus on their strengths and align their activities. In this paper we will focus on building capacity in holistic care in a community that surrounds those living with Kabuki Syndrome and their caregivers. Together we are going to make care work even better!
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