program at
a glance

International Network Meeting –
for MPS Delegates only

Wednesday, April 3, 2024

Thursday, April 4, 2024

Scientists & Families: 03:00 - 08:00 pm
Opening ceremony

TIME

TITLE

SPEAKER

03:00 pm

Opening presentation: “Auf Augenhöhe – On Eye Level”

Ali Mahlodji, Fredi Wiesbauer, Carmen Kunkel, Michaela Weigl, Eva Luise Köhler

04:00 – 06:00 pm

“Auf Augenhöhe - On Eye Level” Communication on an equal footing Panel Discussion

MPS Adult Jibreel, Jonathan Montagu, Jenny Klein, Julie Eisengardt, Elke Schubert Hjalmarsson, Georg Schetter

06:00 – 08:00 pm

Get-together at the exhibition

Friday, April 5, 2024

Scientists & Families: 08:45 – 10:15 am
Clinical Management

Chair: Maurizio Scarpa & Bob Stevens

TIME

TITLE

SPEAKER

08:45 – 09:15 am

Benefit and limitations of personalized medicine

Nicholas Schorck

09:15 – 09:45 am

Critical Trial Endpoint – Beyond IO

Julie Eisengardt

09:45 – 10:15 am

Management of sleep in MPS and related diseases

Osman Ipsiroglu

10:15 – 10:45 am

Coffee break

Additional workshop for parents of affected persons

10:45 – 12:00 am

Workshop 1
“Mindfullness/Wellbeing”

Claire Garthwaite

Scientists: 10:45 – 12:15
Translational Research

Chair: Roberto Giugliani & Terri Klein

10:45 – 11:05 am

Role of inflammation

Brian Bigger

11:05 – 11:25 am

Genetic diagnostic tools in rare diseases

Holger Prokisch

11:25 – 11:55 am

NMR-metabolomics: Identifying indicators for neurodegeneration and disease progression in Metachromatic Leukodystrophy

Lucia Laugwitz

11:45 – 12:05 pm

In silico drug discovery techniques

Johannes Kirchmair

Families: 10:45 – 12:15
Clinical research

Chair: Barbara Plecko

10:45 – 11:05 am

Cardiac manifestations in MPS and related diseases

Christoph Kampmann

11:05 – 11:25 am

Airway disease and management in MPS and related diseases

Joe Muenzer

11:25 – 11:55 am

Tracheal surgery in MPS IVA

Iain Bruce

11:45 – 12:05 pm

Neurosurgical aspects and treatment methods in MPS and related diseases

Philip Kunkel

12:15 – 02:00 pm

Lunch

Scientists Lunch Symposium

12:30 – 01:45 pm

Takeda Lunch Symposium for scientists
Sponsored by Takeda

Scientists: 02:00 – 03:30 pm  
Clinical Presentation and Diagnostics

02:00 – 02:25 pm

Free sialic acid storage disorders

Jonathan Montagu

02:25 – 02:40 pm

MPS X

Barbara Plecko

02:40 – 03:05 pm

Multipler Sulfatase deficiency

Lars Schlotawa

03:05 – 03:30 pm

Newborn-screening in MPS and related diseases – benefit and challenges

Barbara Burton

Families: 02:00 – 03:30 pm
Transition, Development and Challenges

02:00 – 02:25 pm

Transition and Empowerment

Karolina Stepien

02:25 – 02:40 pm

Aging with MPS: physical aspects

John Mitchell

02:40 – 03:05 pm

Aging with MPS: social aspects

Zsuzsanna Almassy

Additional workshop for affected persons

02:00 – 06:00 pm

Workshop 2
“Simulation Workshop”

Florian Lagler

03:30 – 04:00 pm

Coffee break

Scientists & Families:  04:00 – 06:00 pm
Diagnostic and Treatment Updates    

04:00 – 04:30 pm

Sanfilippo Clinical guidelines

Cara O’Neill

04:30 – 05:00 pm

Overview on gene therapy in lysosomal diseases

Simon Jones

05:00 – 05:30 pm

HSCT and/or ERT in alpha-Mannosidosis

Julia Hennermann

05:30 – 06:00 pm

Intra Uterine ERT

Paul Harmatz

06:15 – 08:00 pm

Remembrance ceremony

Saturday, April 6, 2024

Scientists & Families:
08:45 – 10:15 am Study updates

Chair: Brian Bigger

TIME

TITLE

SPEAKER

08:45 – 09:10 am

Late breaking news 1

NN

09:10 – 09:30 am

Late breaking news 2

NN

09:30 – 09:55 am

Late breaking news 3

NN

09:55 – 10:15 am

Late breaking news 4

NN

Additional workshop for affected persons

08:45 – 10:15 am

Workshop 3
“Important Aspects on Physiotherapy: The Hands (Carpal tunnel, contractures)”

Christine Wurlitzer

10:15 – 10:45 am

Coffee break

Additional workshop for affected persons

10:45 – 12:15 am

Workshop 4
“Important Aspects on Physiotherapy: Immobility and its Consequences”

Christine Wurlitzer

10:45 – 12:15 am

Workshop 5
“Mindfullness/Wellbeing” 

Claire Garthwaite

Scientific: 10:45 – 12:15  
New Study approaches

Chair: Paul Harmatz  & Kim Angel                                                       

10:45 – 11:15 am

Update on clinical trials in ML

Patty Dickson

11:15 – 11:35 am

Fusion proteins – ongoing clinical trials

Mireia del Toro

11:35 – 11:55 am

Update on clinical trials in PPS

Roberto Giugliani

11:55 – 12:15 pm

ICV/IT ERT

Fatih Ezgü

Families: 10:45 – 12:15  
Understanding new study approaches                              

10:45 – 11:15 am

New treatment methods

Maurizio Scarpa

11:15 – 11:35 am

Understanding gene therapy

Alex Broomfield

11:35 – 11:55 am

Repurposing of approved drugs

Anna Maria Wiesinger

11:55 – 12:15 pm

Discussion

12:15 – 01:45 pm

Lunch

Scientists & Families: 01:45 – 03:15 pm
Anesthesia and Skeletal Disease Manifestations

01:45 – 02:15 pm

Anesthesia in MPS/ML and related diseases

Thorsten Dohrmann

02:15 – 02:45 pm

Surgical and non-surgical treatment options for spinal disease manifestations

Neil Oxborrow

02:45 – 03:15 pm

Treatment options for hip dysplasia and lower limb deformities in MPS and ML

Sandra Breyer

Additional workshop for affected persons

02:00-03:30 pm

Workshop 6
“Technical orthopedics” 

Mike Unmacht

03:15 – 04:00 pm

Coffee break

Scientists & Families: 04:00 – 06:00 pm
Living with MPS from an adult/juvenile perspective

Chair: Stewart Rust                                                                                     

04:00 – 06:00 pm

Patient Experiences “Aging with MPS and related diseases”

Balint Velich, Alexia Brandau, Rachel Siew, Jenny Klein, Manoe Susanna

07:30– 10:30 pm

Network Dinner at the congress hall

Sunday, April 7, 2024

Scientists: 09:00 – 10:30 am
Best of Poster Session                                      

TIME

TITLE

SPEAKER

09:00 – 09:30 am

2 x short presentations

09:30 – 10:00 am

2 x short presentations

10:00 – 10:30 am

2 x short presentations

Families: 09:00 – 10:30 am
Supportive Therapies

09:00 – 09:30 am

Osteopathy

Susanne Kiener

09:30 – 10:00 am

Pain Management – State of the art plus complementary approaches

Lucia de Zen

10:00 – 10:30 am

Psychological support for patients and families

Stewart Rust

10:30 – 11:00 am

Coffee break

Scientists & Families: 11:00 – 13:15 pm
Future Prospectives  

Chair: Simon Jones

11:00 – 11:20 am

MPS like diseases

Kurt Ullrich

11:20 -11:40 am

Shaping Safe Systems for MPS: A New Perspective on Patient Safety

Florian Lagler

11:40 – 12:00 pm

Innovative approaches (AI) in health care – what they can achieve

Jama Nateqi

12:00 – 12:30 pm

Panel discussion: where are we going? Patients need driven development or product-driven demand?

Terri Klein

12:30 – 01:00 pm

Abstract awards & Take home

01:00– 01:15 pm

Outlook on 2026/Farewell
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