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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.  

Cystinosis Ireland is proud to announce that the 11th Annual Dublin Cystinosis Workshop 2025 will be held in person on Thursday and Friday, 24th and 25th April 2025 (Saturday 26th is the family only agenda), at The Royal Marine Hotel, Dun Laoghaire, Co. Dublin, Ireland.   

This year, the Cystinosis Ireland Research Committee and the DCW Scientific Committee have decided to have a workshop which will be focused on “Kidney aspects of cystinosis - emphasising research development”.   

The Dublin Cystinosis Workshop is the only annual scientific workshop in Europe focused on cystinosis. Its aim is to share new research developments in the area of cystinosis and to stimulate discussions and collaborations, converting new ideas into research that moves the field forward.

This is a closed workshop, and participation is only possible by invitation, or invitation following abstract selection. 

Cystinosis Ireland is proud to announce that the 11th Annual Dublin Cystinosis Workshop 2025 will be held in person on Thursday and Friday, 24th and 25th April 2025 (Saturday 26th is the family only agenda), at The Royal Marine Hotel, Dun Laoghaire, Co. Dublin, Ireland.

This year, the Cystinosis Ireland Research Committee and the DCW Scientific Committee have decided to have a workshop which will be focused on “Kidney aspects of cystinosis - emphasising research development”.   

 This is a closed workshop, and participation is only possible by invitation, or invitation following abstract selection. Early-stage postdoctoral researchers and PhD candidates are invited to submit abstracts on any aspect of cystinosis research for inclusion at the scientific poster session of the 11th Annual Dublin Cystinosis Workshop.   

Even though the theme of the workshop is Kidney aspects of cystinosis we welcome abstracts on any aspect of cystinosis research.   

 Please see here the details for abstract submission. Deadline for submission of abstracts is 5pm (Irish time) 15th January 2025

 Abstracts will be peer reviewed and based on this review you may be invited to attend the DCW 2025 for the poster presentation.  

 

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

Day 1 Thursday 24th April 2025

SESSION ONE – Theme: Newborn screening

Chair:  Bert van den Heuvel

Start Speaker Topic Institution Country
11.45 Koenraad Veys and Anne Marie O’Dowd Introduction Cystinosis Ireland Ireland and Belgium
12.00 Avril Daly Newborn Screening, a EURORDIS perspective EURORDIS Ireland
12:30 Marcel Neelen NGS-based approaches for Newborn Screening: a Dutch perspective NGS-based approaches for Newborn Screening: a Dutch perspective NGS-based approaches for Newborn Screening: a Dutch perspective

SESSION TWO - Theme:   Prevention (of progression) of cystinosis kidney disease: novel approaches

Chair:  Jennifer Hollywood

Start Speaker Topic Institution Country
14.00 Elena Levtchenko mRNA-based therapy in cystinosis mRNA-based therapy in cystinosis Netherlands
14.30 Paul Goodyer Kidney-targeted Lipid Nanoparticle-based mRNA therapy Mc Gill University Canada
15.00 Giusi Prencipe NLRP2 inflammasome and inflammation in cystinosis kidney disease Bambino Gesu Italy
15.45 Jennifer Hollywood mTOR inhibition as a therapeutic approach in cystinosis University of Auckland/ University of Cork New Zealand/ Ireland
16.15 Ester De Leo Effect of Luteolin on chronic kidney disease in cystinosis Bambino Gesu Italy
16.45 Francesco Bellomo Ketogenic diet and progression of kidney disease in cystinosis animal models Bambino Gesu Italy

 SESSION THREE: KEYNOTEThe Ketogenic Diet in prevention and treatment of disease

Chair:  Elena Levtchenko

Start Speaker Topic Institution Country
17.30 Simon Heales Understanding the ketogenic diet in prevention and treatment of disease UCL, GOSH, London United Kingdom

Theme: Funding opportunities

Chair: Achim Treumann

Start Speaker Topic Institution Country
18.00 Martha Cahill Update on the Future of Health Calls Enterprise Ireland Ireland
19.00 Close

Day 2 Friday 25th April 2025

SESSION FOUR & KEYNOTE – Theme: Kidney metabolism in health & disease

Chair:  Elena Levtchenko

Start Speaker Topic Institution Country
08.30 Markus Rinschen Kidney and renal proximal tubule metabolism in health and disease Aarhus University Denmark
09.30 Sante Princiero Berlingerio Modulation of energy metabolism in cystinosis Emma Children’s Hospital, Amsterdam The Netherlands

SESSION FIVE – Theme: Kidney regeneration, future kidney replacement therapy perspectives, and kidney disease modelling

Chair:  Koenraad Veys

Start Speaker Topic Institution Country
10.20 Bart Smeets Regeneration of the proximal tubule compartment and potential therapeutic strategies Radboud UMC Nijmegen The Netherlands
10.50 Fanny Oliveira Arcolino Employing the kidney regeneration toolbox for cell-based therapy and optimization of kidney grafts Amsterdam UMC The Netherlands
11.20 Moin Saleem Gene therapeutic approaches to podocytopathies University of Bristol UK
11.50 Anne Metje van Genderen Modelling the healthy and diseased kidney in vitro using organoids & 3D- printing Utrecht University The Netherlands

SESSION SIX - Theme: Clinical perspectives in cystinosis

Chair:  Francesco Emma

Start Speaker Topic Institution Country
13.30 Herbie Newell CF-10: an update University of Sunderland UK
14.05 Katharina Hohenfellner Clinical guidelines in cystinosis Roseheim Germany
14.40 Angela Ferruli The potential of desmopressin treatment in cystinosis. Amsterdam UMC The Netherlands

SESSION SEVEN: Cystinosis Ireland funded Research Project: Updates

Chair: Anne Marie O'Dowd

Start Speaker Topic Institution Country
15.15 Minnie Sarwal/Swastika Sur UCSF, California USA
Rik Gijsbers KU Leuven Belgium
Joyce Senior University College Dublin Ireland
Anuj Chauhan - pre recorded Colorado School of Mines USA
16.30 Non scientific presentations for families
17.00 Mick Swift and Anne Marie O'Dowd Wrap up Cystinosis Ireland Ireland
17.10 Poster session
18.00 Meeting close
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