We invite you to participate in a unique event bringing together the scientific community, clinicians, patients, and their families, which will take place on May 29–30, 2026, at the “Children’s Memorial Health Institite” in Warsaw, Poland.

The first day of the event (May 29, 2026) will be devoted to lectures and expert discussions on the diagnosis, symptoms, and modern treatment methods for CDG, to which we also invite the patients’ parents.

The second day will feature practical lectures, workshops, and meetings for patients and their families, as well as specialists, focused on daily care, rehabilitation, and support.

Experts from Poland and abroad will participate in the event. Q&A sessions and opportunities for networking and sharing experiences are also planned, along with parallel activities for children.

We invite patients’ parents to submit questions to the specialists, which will be discussed anonymously during the workshops, to the email address: pacjent.ultrarzadkie@ipczd.pl by May 17, 2026.

AGENDA

May 29–30, 2026

Friday, May 29, 2026 — Scientific Conference

CDG at CMHI – 2nd Patient Meeting with and Scientific Conference

Hybrid conference with simultaneous interpretation, also available online upon prior registration at: pacjent.ultrarzadkie@ipczd.pl

Friday, 29 May 2026

Conference Room 119, Building F, 1st Floor
Children’s Memorial Health Institute (IPCZD), Warsaw, Poland

• 9:00–9:20 Opening of the Conference – Dr Marek Migdał – Director, Children’s Memorial Health Institute (CMHI); Prof. Dariusz Rokicki, MD, PhD; Dr Milena Greczan; Dorota Cimięga
•  
• I Session
• Chairs Dr Milena Greczan; Dr Edyta Heropolitańska-Pliszka
•  
• 9:20–9:50 The Role of Glycosylation in Human Biology – Prof. Marcin Czerwiński, Glycobiology Laboratory, Hirszfeld Institute of Immunology and Experimental Therapy, Polish Academy of Sciences, Wrocław, Poland
•  
• 9:50–10:10 CDG Through the Years: From First Discovery to Current Understanding – Prof. Jaak Jaeken, Center for Metabolic Diseases, University Hospital Gasthuisberg, KU Leuven, Belgium (online)
•  
• 10:10–10:30 An Overview of Congenital N- and O-Glycosylation Disorders and Mixed Forms – Andrew Edmondson, MD, PhD, Division of Human Genetics, Department of Pediatrics, Children’s Hospital of Philadelphia, Philadelphia, USA (online)
•  
• 10:30–10:45 Coffee Break
•  
• II Session
• Chairs Prof. Dariusz Rokicki; Dr Milena Greczan
•  
• 10:45–11:05 Congenital Disorders of GPI Anchor Biosynthesis – Dr Michał Patalan, Department of Pediatrics, Rare Diseases and Metabolic Medicine, Pomeranian Medical University, Szczecin, Poland
•  
• 11:05–11:25 CDG and Cardiology – Dr Joanna Friedman, Department of Cardiac Surgery, Children’s Memorial Health Institute, Warsaw, Poland
•  
• 11:25–11:45 What Connects CDG and IEI – From Theory to Practice – Dr Edyta Heropolitańska-Pliszka, Immunology Clinic, CMHI, Warsaw, Poland
• 11:45–12:05 ER Stress Theory and Unfolded Protein Response in CDG: Impact on Immunology and Hematology – Prof. Wojciech Młynarski, Department of Pediatrics, Oncology and Hematology, Medical University of Łódź, Poland
•  
• 12:05–12:15 Discussion
•  
• 12:15–12:35 Coffee Break
•  
• Session III
• Chairs Prof. Robert Śmigiel; Dr Milena Greczan
•  
• 12:35–12:50 Neurological Disorders in CDG – Prof. Dariusz Rokicki, Department of Pediatrics, Nutrition and Metabolic Diseases, CMHI
•  
• 12:50–13:10 Stroke-Like Episodes in PMM2 CDG: Early Evidence from European Cohorts and Transcriptomic Approaches – Dr Florencia Epifani and Prof. Mercedes Serrano, Hospital Sant Joan de Déu / IRSJD, Barcelona, Spain (online)
•  
• 13:10–13:25 Nephrological Problems in CDG – Agnieszka Janiec, Department of Pediatrics, Nutrition and Metabolic Diseases, CMHI
•  
• 13:25–13:40 CDG in the Perinatal Period – Dr Milena Greczan, Department of Pediatrics, Nutrition and Metabolic Diseases, CMHI
•  
• 13:40–13:50 Discussion with all speakers
•  
• 13:50–14:40 Lunch
•  
• Session IV
• Chairs Dr Dorota Wesół-Kucharska; Dr Milena Greczan
•  
• 14:40–15:10 Diagnostic Possibilities in CDG: Biomarkers and Biochemical Diagnostics –             Dr Anna Bogdańska, Metabolic Disorders Laboratory, CMHI
•  
• 15:10–15:30 Genetic Diagnostics in CDG – Opportunities and Challenges – Prof. Robert Śmigiel, Medical University of Wrocław
•  
• 15:30–15:50 Advances in the Treatment of Congenital Disorders of Glycosylation and Future Perspectives – Prof. Eva Morava, Icahn School of Medicine at Mount Sinai, New York, USA
•  
• 15:50–16:05 Drug Repurposing – Dr Ethan Perlstein, Perlara
•  
• 16:05–16:20 Break
•  
• 16:20–16:30 Parents’ Perspective – Dorota Cimięga
•  
• 16:30–16:40 10 Minutes with CDG CARE – Ivan Martinez Duncker, MD, ScD, CDG CARE / Morelos State University, Mexico
• 16:40–17:00 Discussion and Closing of Day 1

Parallel activities and entertainment for children

19:00 Dinner

Saturday, 30 May 2026

Workshops for parents and professionals
Educational Centre, CMHI (lower ground floor, connector between Buildings D and E)

• 9:00–9:30 Alternative Communication Methods – Agnieszka Warzecha, MSc, Physiotherapy Unit, Rehabilitation Department, CMHI
• 9:30–9:50 Communication Without Barriers – AAC and MÓWik in children with CDG and complex communication difficulties – Sebastian Szufa, MÓWik
• 9:50–10:10 Break
• 10:10–10:40 Home Physiotherapy – Physiotherapy Unit, Rehabilitation Department, CMHI (to be confirmed)
• 10:40–11:00 Feeding Difficulties – How to Work with a Child – Agnieszka Warzecha, MSc
• 11:00–11:30 Nutrition in Patients with CDG – Alicja Syc, MSc and Katarzyna Chyż, MSc, Department of Pediatrics, Nutrition and Metabolic Diseases, CMHI
• 11:30–12:00 Challenges and Rewards of Caring for a Child with a Chronic Disease – Karolina Gątarek, MSc
• 12:00–13:00 Lunch

13:00 Workshop Q&A Sessions