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Dublin Cystinosis Workshop 2025

The 11th Annual Dublin Cystinosis Workshop will be held on 24th and 25th APRIL 2025. There will be a cross-over scientific and family agenda on 25th April and a family only event on 26th April.  

The Dublin Cystinosis Workshop is the only annual scientific workshop in Europe focused on cystinosis. 

The aim of the DCW is to share new research developments in the area of cystinosis and to stimulate discussions and collaborations and can convert new ideas into real research that moves the cystinosis research field forward. 

Topics presented at the workshop will cover the spectrum of basic science through to translational research. 

Early-stage researchers and PhD students are strongly encouraged to present their research at the DCW. 

As it is a closed meeting (no industry) and participation is by invitation only, researchers are free to present their latest scientific work to colleagues spanning a wide range of cross-cutting disciplines from basic science through to translational research. 

The meeting will take place over two days 24 & 25 April

The agenda is being finalised and will be published here when confirmed.

Our Speakers

The DCW draws some of the most well known experts in the clinical and research fields as well as new and aspiring members of our community. As speakers are confirmed, they will be updated here.

Organising Committee

Cystinosis Ireland is grateful for the skill, knowledge and expertise of our organising committee in developing this workshop.

Dr Koenraad Veys - MD PHD, Paediatrician, Consultant in Pediatric Nephrology in UZ Leuven - Scientific Chairperson

Prof Elena Levtchenko - UMC Amsterdam 

Prof Francesco Emma - Bambino Gesù Children’s Hospital IRCCS

Prof Bert van der Heuvel - KU Leuven 

Dr Jennifer Hollywood - UCC

Prof Atif Awan - Consultant Paediatric Nephrologists, Temple Street Children’s University Hospital, Dublin

Dr Ruth Davis - Cystinosis Ireland Research Committee Member

Dr Thomas J McDonald - Bristol Myers Squibb and Cystinosis Ireland Board Member

Ms Anne Marie O’Dowd - Chairperson, Cystinosis Network Europe and Cystinosis Ireland Board Member

Ms Eibhlis Shanahan - Cystinosis Ireland Research Committee Member

Dr Achim Treumann - Director, Analytical Formulation Sciences and Site Head at KBI Biopharma BV – Cystinosis Ireland Scientific Advisor

Dr Tracey McCauley - Cystinosis Ireland Research Manager

Ms Denise Dunne - Cystinosis Ireland Operations Manager

The Professor Roz Anderson Memorial Prize is awarded to the best scientific research presentation made by an early career researcher in the field.

Cystinosis Ireland is delighted to announce the winner of the 10th Annual Dublin Cystinosis Workshop, Professor Roz Anderson Memorial Awardto Sante Princiero Berlingerio of KU Leuven, Belgium presenting his work “Targeting oxidative stress-driven lipid peroxidation improves podocyte dysfunction in cystinosis”.

Sante obtained his MSc in Biological Sciences in Bari (Università Degli Studi di Bari, Aldo Moro) were he joined the laboratory of Prof. Valenti to study Aquaporin 2 trafficking in the collecting duct of the kidney. Afterwards, he broadened his expertise in kidney disease by joining as a PhD student the laboratory of Pediatric Nephrology in KU Leuven, led by Prof. Elena Levtchenko and Prof. Lambertus van den Heuvel. During his doctoral studies, he developed an adult zebrafish model to study cystinosis and gained insights into the metabolic dysfunction of cystinosis podocytes, discovering that targeting oxidative stress-driven lipid peroxidation improves podocyte dysfunction in vitro and restores the glomerular filtration barrier in vivo.

In February 2024, Cystinosis Ireland invited 40 experts in cystinosis research and treatment as well as experts working in the field of myopathy (muscle wasting) to join us for the 10th annual Dublin Cystinosis Workshop. 

Speakers included keynote addresses from Dr Reza Sadjadi, Harvard Medical School, USA, on Clinical trial readiness, myopathy and dysphagia assessment in adults with Nephropathic Cystinosis; and Philippos Mourikis of East-Paris University, France, on Muscle stem cells and their niche and how it can be used to study severe and mild myopathy. Projects currently funded by Cystinosis Ireland were presented in video updates.

The meeting was delighted to award the 2024 Professor Roz Anderson memorial prize to Sante Princiero Berlingerio of KU Leuven, Belgium presenting his work “Targeting oxidative stress-driven lipid peroxidation improves podocyte dysfunction in cystinosis”. 

The agenda for the the 2024 meeting was

Session 1 – Theme:  Cystinosis myopathy: from childhood to adolescence.  

Chair:  Rik Gijsbers

Session 2 - Theme:  Neuro-muscular expert view on cystinosis.

Chair:  Atif Awan

Session 3 - Theme: Cystinosis Ireland Research project updates via video

Chair:  Achim Treumann

Session 4 - Poster Session

Session 5- Theme: Stem cell-based models for myopathy (1)

Chair:  Reza Sadjadi

Session 6 - Theme:  Stem cell-based models for myopathy (2)

Chair Paddy Harrison