Thursday, 8 June 2023
14:00 – 15:00 Registration and Coffee
15:00 – 15:15 Welcome
Ann Raes, Gent
Lore Willem, Leuven
15:15 – 17:00 Nutritional and Other Health Challenges
Chairs: Brigitte Adams, Brussels
Imelda Hamels, Leuven
15:15 - 15:40 Young Transplantoux: Physical activity in children and adolescents with organ transplantation
Nico Vandenrijn, Leuven
Diethard Monbaliu, Leuven
15:40 - 16:00 Difficult eater pre- and post kidney transplant
Ann Desloovere, Gent
16:00 - 16:20 Accompanying parents and their child with CKD in feeding difficulties: a speech therapist's point of view
Emeline Jacquet, Brussels
16:20 - 16:40 Diet restrictions in CKD, what's new?
Katrien Van der Vaerent, Leuven
16:40 - 17:00 An infant with stage 4 CKD and Bardet-Biedl syndrome 7 – a learning experience
Ellen White, London
Tara Hall, London
18:30-19:30 Welcome reception at the City Hall of Leuven
Friday, 9 June 2023
08:30 - 09:40 The Parents' Burden
Chairs: Quentin Bertrand, Liège
Sarah Reynaert, Antwerp
08:30 - 08:50 Illness-related Parental Stress and Quality of Life in Children with Kidney Diseases
Lore Willem, Leuven
08:50 - 09:20 Living loss in parents of children with CKD
Elke De Bruyne, Gent
09:20 - 09:40 Nutrition and the Personal Burden among families with a child with ESRD or dialysis
Nancy Kamphuis-Serpa, Nijmegen
09:40 - 10:10 Schooling in the Hemodialysis Unit
Chairs: Quentin Bertrand, Liège
Sarah Reynaert, Antwerp
09:40 - 09:55 Learning can be fun in a pediatric hemodialysis unit
C.Mille, Lille
09:55 - 10:10 Hemodialysis resulting in a positive educational development: case report about Hiba for inspiration
Dorina Koenders, Nijmegen
Linda Sprunken, Nijmegen
10:10 - 10:40 Coffee Break
10:40 - 12:30 Genetic and Disease Specific Aspects
Chairs: Nathalie Godefroid, Brussels
Lore Willem, Leuven
10:40 - 11:10 Ethical, legal and social implications of next generation sequencing
Pascal Borry, Leuven
11:10 - 11:40 Counselling families with rare genetic kidney diseases: lessons from a renal genetic clinic
Detlef Bockenhauer, Leuven
11:40 - 12:00 Patients and caregivers in front of non-adherence in cystinosis
Gema Ariceta, Barcelona
12:00 - 12:10 Quality of Life in Adolescent ADPKD Trial Participants
Dorothee Oberdhan, Princeton, NJ
12:10 - 12:30 Quality of life of patients with PUV
Valeska Bidault, Lyon
12:30 - 13:00 Guided Poster Walk (List of posters see below)
Guides: Djalila Mekahli, UZ Leuven
Ariadne van Hulle, UZ Leuven
13:00 – 14:00 Networking lunch
14:00 - 15:40 Tools and Best Practice Examples
Chairs: Ann Raes, Gent
Annelies Verhaeghen, Leuven
14:00 - 14:25 Social media and teens’ mental health: unraveling a complex relationship
Laura Vandenbosch, KU Leuven
14:25 - 14:45 Disease-specific patient information brochures
Joanna Sladowska, Heidelberg
14:45 - 15:00 SOPHIA –interdisciplinary treatment for children with kidney disease
Stefanie Kraft, Hamburg
Anna Sommer, Hamburg
15:00 - 15:20 Psychosocial MDT Working to Support Children and Families in Preparation for Kidney Transplant
Deanne Kenward, Bristol
Kathryn Taylor, , Bristol
Rosalind Cooper, Bristol
15:20 - 15:40 Coffee Break
15:40 - 17:10 Ethical and Legal Decision Making in Complex Patients
Chairs: Chris Reid, London
Dirk Bethe, Heidelberg
15:40 - 16:05 You may have missed it but everything changed
Dean Wallace, Manchester
Mohan Shenoy, Manchester
16:05 - 16:20 Psychosocial impact of ASD on the treatment and care of a 10 year old girl with complex nephrotic syndrome
Emma Rigby, London
16:20 - 16:45 Best interests decision making and deprivation of liberty in end stage kidney disease care
for adolescents who lack capacity: an experience from a UK paediatric nephrology centre
Natalie Wyatt, London
16:45 - 17:10 Joint discussion
17:10 - 19:30 Time free in Leuven
19:30 Gala Dinner
Saturday, 10 June
09:00 - 10:00 CKD and the Multidisciplinary Team
Chairs: Caroline Booth, London
Nancy Kamphuis-Serpa, Nijmegen
09:00 - 09:15 Ethical dilemmas of medical refugees
Ethy Hendriks, Nijmegen
Nancy Kamphuis-Serpa, Nijmegen
09:15 - 09:30 To what extent does non-adherence amongst adolescents’ factor in the move from
CKD clinic to dialysis and what should we do about it?
Ellen White, London
09:30 - 09:45 Identifying obstacles for living donor kidney transplantation among pediatric CKD patients in the Netherlands
Lilach C. Regev-Epstein, Amsterdam
09:45 - 10:00 Ciliopathy outpatient clinic
Jacqueline Knoll, Nijmegen
10:00 - 10:20 EWOPA Business Meeting
Dirk Bethe, Heidelberg
10:20 - 10:35 Coffee Break
10:35 - 12:35 Transition to Adult Healthcare
Chairs: Stéphanie Leroi, Liège
Robert Novo, Lille
10:35 - 11:05 (Personal experiences, title follows)
(patient family, to be appointed)
11:05 - 11:25 Transition, from the perspective of the Pediatric Nephrologist
Laure Collard, Liège
11:25 - 11:45 Barriers to the successful health care transition of patients with kidney disease
Jenny Prüfe, Essen
11:45 - 12:00 The individualized, accompanying transition program “TraiN” for adolescent kidney patients
Luisa Klein, Cologne
12:00 - 12:15 'Moving on Up Together: 16+ pathway' - an addition to the 'Ready Steady Go' transition programme
Arvind Nagra, Southampton
12:15 - 12:35 Transition, from the perspective of the Adult Nephrologist
Amaryllis Van Craenenbroeck, Leuven
12:35 - 12:40 Closing Remarks
Lore Willem & Ann Raes & Djalila Mekahli
Conference Closure
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Posters
The impact of dietary modifications on teenagers receiving intermittent haemodialysis - a patient survey
Tara Hall, Triona Joyce, Heidi Ramsey, Dr Gajendran Sellathurai, Dr Manish Sinha, London
The « educational project » in pediatric hemodialysis
Valentine Lurquin, Liège
Disease Burden and Disease Progression of Young Adult Patients with Autosomal Dominant Polycystic Kidney Disease (ADPKD)
Eric Davenport, Xiaolei Zhou, Jinyi Wang, Sasikiran Nunna, Dorothee Oberdhan, Ancilla Fernandes, Djalila Mekahli,
Conceptual Mapping of the PedsQL to ADPKD
Dorothee Oberdhan, Sasikiran Nunna, Princeton, NJ
Study on the experience of pain, quality of life and symptoms of anxiety and depression in adolescents and young adults with ADPKD
Lore Willem, Leuven
The Need for Service Evaluation for Young People with Chronic Kidney Disease (CKD)
Shahid Muhammad, Bristol
Clinical characteristics and outcome of patients with atypical Hemolytic Uremic Syndrome
Johan van de Walle, Gent
A virtual patient support group
Arvind Nagra, Southampton
Nurse driven pediatric Procedural Sedation and Analgesia team (PROSA) in the Leuven University Hospitals
Cremers L, Vanhonsebrouck K, Toelen J, Renard M,