**** DRAFT PROGRAMME ****
This is a draft conference programme, and may be altered without notice.
Last updated on 14th July 2025
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Educational Day, Thursday 4th September 2025
Amsterdam UMC, location AMC
08:30 – 09:15
Arrival and Registration
09:15 – 09:30
Welcome from the Conference Organisers
SESSION 1
09:30 – 10:00
Keynote
Jan Paul Wagenaar
TSC – Our journey with a rare disease
10:00 – 10:45
Keynote
Prof. Therese van Amelsvoort
Transition from youth to adult care, most recent insights and future challenges
10:45 – 11:15
Morning Refreshments
SESSION 2
11:15 – 12:00
Keynote
Dr. Janneke Zinkstok
Family-oriented care for rare genetic syndromes
12:00 – 12:45
Free Communications
3 x 15 min
Jeanne Wolstencroft
Mental health support priorities for families caring for children with rare genetic conditions
Josephine Haddon
Family Emotional climate is associated with neuropsychiatric outcomes in young people with neurodevelopmental risk genetic conditions
Danielle Baribeau
Psychopharmacology in children with genetic disorders of epigenetic and chromatin regulation
12:45 – 13:45
Lunch
SESSION 3
13:45 – 14:30
Keynote
Professor Mieke van Haelst
Care for Genetic Obesity – experiences from the Dutch Expert Center for Genetic Obesity
14:30 – 15:15
Free Communications
3 x 15 min
Jessica Hall
Longitudinal development of prodromal psychosis in young people at high genomic risk of schizophrenia
Ann Swillen
The added value of using infographics on the educational and psychosocial needs of children and adolescents with 22q11 DS in school: the Leuven experience
Ida Elken Sønderby
TRICXY-MINDS: Clinical insight into sex TRIsomies for enhanced psychiatric Care in individuals with X and Y chromosomal aneuploidies in Norway
15:15 – 15:45
Afternoon Refreshments
SESSION 4
15:45 – 16:15
Keynote
Dr. Mirthe Klein Haneveld
Clinical practice guidelines for rare genetic conditions associated with intellectual disability
16:15 – 16:45
Free Communications
2 x 15 min
Nicole Tartaglia
Exploring the Role of Parental Cognitive Skills on 36-month Outcomes in Children with Prenatally Diagnosed XXY, XYY, and Trisomy X
Kayla Smith
Advancing detection of social anxiety in fragile X syndrome: A multi-method exploration of social behaviour, heart activity, and heart rate-defined sustained attention
16:45
Close of Educational Day
18:30 – 20:30
Welcome Reception – Groot Melkhuis, Vondelpark
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Research Symposium Day 1 - Methodology for Rare
Friday 5th September 2025, KIT Institute, Amsterdam
08:15 – 08:45
Registration (for new arrivals) and Poster Set-up
08:45 – 09:00
Welcome from the Conference Organisers
SESSION 5
09:00 – 09:45
Keynote
Professor Emily Farran
What are the gaps in research for the communities of people with Down Syndrome, Fragile X Syndrome and Williams Syndrome?
09:45 – 10:00
The Pat Howlin Prize
Alice Federica Maria Montanaro
Cognitive behavioral therapy in adolescents with Fragile X Syndrome: a feasibility randomized controlled trial
10:00 – 10:30
Free Communications
2 x 15 min
Flora Tassone
Molecular, Neurocognitive and Psychosis Risk Profiles in Youth and Young Adults with 22q11.2 Deletion Syndrome: Longitudinal Findings from a Multimodal Study
Sarah Eley
Gene therapy in Fragile X Syndrome: A caregiver perspective
10:30 – 11:00
Morning Refreshments
SESSION 6
11:00 – 11:45
Keynote
Dr. Peter van de Ven
Statistical challenges of trials in rare genetic disorders
11:20 – 11:50
Speed Presentations
6 x 5 min
Kaat Theelen
Development and validation of the Klinefelter-Associated Neurodevelopmental Difficulties (KAND) Checklist: a three-phase mixed-methods study
Nadia van Silfhout
PROM4RARE: the final core patient reported outcome set for individuals with genetic intellectual disability
Floortje Hosman
COS4TAND: Towards a Core Outcome (Measure) Set for TSC-Associated Neuropsychiatric Disorders (TAND)
Aaron Kaat
Concept Formation as a Cognitive Outcome Measure in Rare Diseases
Lindsey Mizen
Using machine learning to explore behavioural phenotypes across single gene neurodevelopmental conditions
Maarten Otter
Social functioning as a predictor of development in adult women with triple X syndrome
12:15 – 12:30
Combined Q/A
12:30 – 13:45
Lunch and Poster Viewing
SESSION 7
13:45 – 14:30
Keynote
Dr. Lotte Haverman
Bridging the Gap: Developing a Generic PRO Set for Individuals with (Genetic) Intellectual Disabilities
14:30 – 15:00
Free Communications
2 x 15 min
Sara Jane Webb
Factors that impact short and medium term stability on clinical trial measures in children with autism
Jane Waite
Psychometric Properties of the Clinical Anxiety Screen for People with Severe to Profound Intellectual Disabilities and its Application to Cross-Syndrome Research
15:00 – 15:30
Afternoon Refreshments
SESSION 8
15:30 – 15:45
Free Communication
15 min
Sydni Weissgold
An investigation of autonomic function in SYNGAP1-related Intellectual Disability
15:45 – 16:00
Leclezio-de Vries Prize
Tosca-Marie Heunis
Feasibility and Acceptability of the TAND Toolkit App
16:00 – 16:30
Panel Discussion
19:00 – 21:00
Conference Dinner
Vergulden Eenhoorn, Amsterdam
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Research Symposium Day 2 - From Models to Trial
Saturday 6th September 2025, KIT Institute, Amsterdam
08:30 – 09:00
Arrival
SESSION 9
09:00 – 09:45
Keynote
Vivi Heine
Human iPSC-Based Disease Models for Personalized Therapeutics in Neurodevelopmental Disorders
09:45 – 10:30
Free Communications
3 x 15 min
Shanlee Davis
Impact of Infant Testosterone Treatment on Neurodevelopment in Boys with 47,XXY
Randi Hagerman
Controlled Trial of Metformin in Fragile X Syndrome
André Strydom
Evaluation of the effect of intranasal insulin on development and behaviour in PhelanMcDermid syndrome
10:30 – 11:00
Morning Refreshments
SESSION 10
11:00 – 11:45
Free Communications
3 x 15 min
Hilgo Bruining
Bridging Genetic Bridges: Unravelling E/I Imbalance to Unlock Personalized Treatments in Monogenetic Disorders
David Owen
Proteomic profiles related to neurodevelopmental copy number variant carriers in UK Biobank open new insights into internalising and cardiometabolic multimorbidity
Riccardo Brambilla
p70 S6 kinase as a potential peripheral biomarker for 16p11.2 copy number variant- associated neurodevelopmental syndromes
11:45 – 12:10
Speed Presentations
5 x 5 min
Yiting Zhu
Effects of metformin versus placebo on children with fragile X syndrome: a randomized, double-blind, placebo-controlled clinical trial
Mana Nasori
Parents’ and healthcare professionals’ experiences in interprofessional collaboration in rare genetic intellectual disability syndrome: A qualitative study into barriers and facilitators
Darren Hocking
Elucidating interactions between attentional control and socially oriented attention in young children with neurofibromatosis type 1
Damien Wright
Resting state EEG power and connectivity in SYNGAP1-related disorder
Danyong Feng
Age-Varying Distinct Neuroanatomy in Young Children with Autism Spectrum Disorder and Fragile X Syndrome
12:10 – 12:20
Combined Q/A
12:15 – 13:15
Lunch and poster viewing
13:45 – 14:35
SSBP AGM and Award Ceremony
14:35 – 14:45
A Presentation about SSBP 2026
SESSION 11
14:45 – 15:30
Free Communications
3 x 15 min
Claudia Vingerhoets
Anxiolytic effects of riluzole in 22q11.2 deletion syndrome
Danielle Baribeau
An N-of-1 trial of Fluoxetine in KCNC1 related disorder
Lucas Gabriel Gutiérrez Lafrentz
TANDem-2: Closing the Gap to Interventions for TAND – study protocol
15:30 – 16:00
Afternoon Refreshments
SESSION 12
16:00 – 16:30
Keynote
Prof. Marianne van den Bree
Improving care for people with rare genetic variants associated with neurodevelopmental conditions: contributions large longitudinal research cohorts can make
16:30 – 16:45
Closing Remarks
17:00
End of Research Symposium
2025 SSBP Conference
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The Society for the Study of Behavioural Phenotypes (SSBP)
The Society for the Study of Behavioural Phenotypes (SSBP) is an international, interdisciplinary research society for studying the development, learning and behaviours of individuals with genetic disorders and ways of helping to improve lives. The society is registered as a charity in the UK (No. 1013849) and was set up in 1987.
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