1^st WORKING GROUPS MEETING

Friday, 23rd January 2026
Virtual Meeting

Zoom link:
https://uoc-gr.zoom.us/j/88695380530?pwd=Xpwbzylg04CsH88Kb1KpJQXqRFf6dq.1

Meeting ID: 886 9538 0530
Passcode: 070212

AGENDA (time zone CET) – (Download the agenda)

08.45 – 09.00 | Welcome and Introduction by Action’s Chair (H. Papadaki)

09.00 – 10.00 | Working Group 1: The Role of Inflammation in Congenital CNP

• Introduction to WG1 (A. Warren)
• New methodologies to explore clonal haematopoiesis (D. Kent)
• In vitro modeling of stage-specific evolution of clonal haematopoiesis in CN to CN/AML (N. Borbaran-Bravo)
• In vivo modeling of leukemic evolution in ELANE-associated Severe Congenital Neutropenia (J. Haaf)

10.00 – 11.00 | Working Group 2: Acquired and Likely-Acquired CNP and Inflammation

• The genetic background of non-remitting Neutropenia in children and of Chronic Idiopathic Neutropenia in adults (F. Fioredda)
• Linking CNP phenotypes with autoimmunity and autoinflammation (P. Skendros)
• CarD clone: unravelling the inflammation link between acquired/likely acquired CNP and cardiovascular disease (CVD) (G. Tsaknakis)
• Investigation of the inflammation link with nutrition in acquired/likely acquired CNP (A. Eliopoulos, C. Simoglou-Karali)
• Investigation of Microbiome links with acquired CNP (I. Lagkouvardos)
• ACKR1-Associated Neutropenia (ADAN): Clinical insights from a Brazilian cohort (R. Cerqueira)

11.00 – 11.15 | Break

11.15 – 12.15 | Working Group 3: CNP Risk Factor Profiling and ML Predictive Modeling

• Welcome & Introduction (H. Latsoudis, G. Cavalca, G. Manikis, V. Tzikoulis)
• Should WG3 be a horizontal group for the Action? (H. Latsoudis)
• Different data storage models and their benefits (G. Manikis)
• Data pre-processing and Information Management System development (V. Tzikoulis)
• Exploration and application of different statistical and ML models using real data on Neutropenias (G. Cavalca, G. Papoutsoglou)
• Discussion

12.15 – 13.15 | Working Group 4: Drug-induced Neutropenias by Novel Therapies

•  Introduction (A.Pierini, C. Simoglou-Karali, M. Spanoudakis)
•  Exemplars of analyses focusing on drug-induced neutropenia following 
  • treatment with rituxumab (J. Palmblad)
  • exposure to immonomodulatory drugs (C. Simoglou-Karali)
  • CAR-T therapy (V. Quintero)
• Interrogation of unexplored molecular machineries – Bioinformatic analyses applied on multiomic single-cell data  (S. Riva)

13.15 – 13.30 | Break

13.30 – 14.30 | Working Group 5: General Concept and Design of Clinical Trials

• Introduction of the WG5 (J. Skokowa, J. Cichy, V. Bezzerri)
• Regulatory aspects, hurdles and needs on the way to realise personalised medicine in rare diseases (M. Cipolli, V.Bezzerri)

14.30 – 15.30 | Working Group 6: Development of Tools for Evaluation of PROS and QoL

• Introduction of the WG6 (C. Zeidler, C. Karamanidou, E. Laane)
• Proposal for Task allocation (C. Karamanidou)

15.30 – 15.45 | Break

15.45 – 16.30 | Young Neutro-NARPS group

• Introduction to the Young Neutro-NARPS Group (A. Skakic, V. Kargas)
• Deficient regulatory T cells in autoimmune neutropenia of childhood (K. Toutoudaki)
• In vivo gene therapy for Shwachman-Diamond Syndrome (D. Trasanidou) 

16.30 – 17.30 | Neutro-NARPS collaborators

• The Shwachman-Diamond Syndrome Alliance (E. Hars)
• How the Italian Association of Shwachman-Diamond Syndrome supports scientific research (E. Talacchi)
• Rare Diseases Greece Association (D. Athanasiou)
• EHA support of the Neutro-NARPs COST as a part of the SWG engagement (V. Lotushko)

17.30 – 18.00 | General Discussion

18.00 – 18.15 | Closing Remarks

Speakers *	Institution of affiliation	Country of affiliation
Mr Dimitrios Athanasiou	Rare Diseases Greece Vice Chair, Greek Patients Association Board Member European Patient Forum Ethics Board Member	Greece
Prof Valentino Bezzerri	Department of Life Sciences, Health, and Health Professions, Link Campus University, Rome & Cystic Fibrosis Center, Azienda Ospedaliera Universitaria Integrata, Verona	Italy
Dr Natalia Borbaran-Bravo	Division of Translational Oncology, Department of Hematology, Oncology, Clinical Immunology and Rheumatology, University Hospital Tübingen, Tübingen	Germany
Mr Giacomo Cavalca	Clinical Bioinformatics Unit, IRCCS Istituto Giannina Gaslini , Genoa & Alma Mater Studiorum – University of Bologna, Bologna	Italy
Dr Renato Cerqueira	Department of Clinical and Experimental Oncology, Federal University of São Paulo (UNIFESP), Sao Paolo	Brazil
Prof Joanna Cichy	Department of Immunology, Faculty of Biochemistry, Biophysics and Biotechnology, Jagiellonian University, Kraków	Poland
Dr Marco Cipolli	Director, Cystic Fibrosis Center, University Hospital of Verona, Verona	Italy
Prof Aristides Eliopoulos	Medical School, National and Kapodistrian University of Athens, Athens	Greece
Dr Francesca Fioredda	Unit of Hematology-IRCCS Istituto Giannina Gaslini, Genoa	Italy
Mr Jeremy Haaf	Division of Translational Oncology, Department of Hematology, Oncology, Clinical Immunology and Rheumatology, University Hospital Tübingen, Tübingen	Germany
Dr Eszter Hars	President and CEO, Shwachman-Diamond Syndrome Alliance Inc, Woburn, Massachusetts	USA
Dr Christina Karamanidou	Institute of Applied Biosciences, Centre for Research & Technology-Hellas, Thessaloniki	Greece
Dr Vasileios Kargas	Cambridge Institute for Medical Research, University of Cambridge, Cambridge	UK
Prof David Kent	Department of Biology, Centre for Blood Research, York Biomedical Research Institute, University of York, York	UK
Dr Edward Laane	Hematology-Oncology Clinic, Tartu University, Tartu	Estonia
Prof Ilias Lagkouvardos	Department of Clinical Microbiology, School of Medicine, University of Crete, Heraklion	Greece
Dr Helen Latsoudis	Information Systems Laboratory (ICS), Institute of Computer Science, Foundation for Research and Technology Hellas (FORTH), Haemopoiesis Research Lab, School of Medicine, University of Crete, Heraklion	Greece
Mr Volodymyr Lotushko	Specialized Working Group (SWG) Manager, European Hematology Association (EHA)	Netherlands
Dr George Manikis	Computational BioMedicine Laboratory (CBML), Institute of Computer Science, Foundation for Research and Technology – Hellas (FORTH), Heraklion,	Greece
Prof Jan Palmblad	Department of Medicine Huddinge, Karolinska Institutet, Stockholm	Sweden
Prof Helen Papadaki	Haemopoiesis Research Laboratory, University of Crete, Heraklion & University Hospital of Heraklion, Heraklion	Greece
Dr Antonio Pierini	Hematology and Clinical Immunology Section, Center for Hemato-Oncology Research, Department of Medicine and Surgery, University of Perugia, Perugia,	Italy
Dr Victor Quintero	Department of Pediatric Hematology-Oncology, Hospital Universitario La Paz, Madrid,	Spain
Dr George Papoutsoglou	Chief Operations Officer, JADBio, Heraklion	Greece
Mr Simone Riva	MRC WIMM Centre for Computational Biology, Weatherall Institute of Molecular Medicine, Radcliffe Department of Medicine, University of Oxford, Oxford	UK
Dr Cristina Simoglou-Karali	Department of Biology, School of Medicine, National and Kapodistrian University of Athens, Athens, & Medical Research Council Weatherall Institute of Molecular Medicine (MRC WIMM) and NIHR Biomedical Research Centre Hematology Theme, University of Oxford, Oxford	Greece/ UK
Prof Anita Skakic	Institute of Molecular Genetics and Genetic Engineering, University of Belgrade, Belgrade	Serbia
Prof Panagiotis Skendros	First Department of Internal Medicine, University Hospital of Alexandroupolis, Democritus University of Thrace, Alexandroupolis	Greece
Prof Julia Skokowa	Department of Hematology, Oncology, Clinical Immunology, and Rheumatology, University Hospital Tübingen, Tübingen	Germany
Dr Michail Spanoudakis	Department of Haematology, Warrington and Halton Teaching Hospitals NHS Foundation Trust, Cheshire	UK
Ms Eleonora Talacchi	AISS – Associazione Italiana Sindrome di Shwachman	Italy
Mr Vassilis Tzikoulis	Center of Infrastructure, Technology Services, Informatics and Communications, University of Crete, Heraklion	Greece
Dr Grigorios Tsaknakis	Haemopoiesis Research Lab, School of Medicine, University of Crete, Heraklion	Greece
Dr Konstantina Toutoudaki	Hematology Unit, Aghia Sophia Paediatric Hospital, Athens	Greece
Dr Despoina Trasanidou	Molecular Hematology, Sanquin Research and Landsteiner Laboratory, Amsterdam University Medical Centre, Amsterdam	Netherlands
Prof ALAN WARREN	Wellcome MRC Cambridge Stem Cell Institute, University of Cambridge, Department of Haematology, University of Cambridge, Cambridge Institute for Medical Research, Cambridge	UK
Dr Cornelia Zeidler	Severe Chronic Neutropenia International Registry, SCNIR, Hannover & Department of Hematology, Oncology, Clinical Immunology, and Rheumatology, University Hospital Tübingen, Tübingen	Germany

*In alphabetical order