You are welcome to join us on-line at the 1-st day of conference (May 29, 2026).
Please, contact us: pacjent.ultrarzadkie@ipczd.pl
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
09:00 – 09:10 | Opening
- Marek Migdał, MD, PhD — Head of the Children’s Memorial Health Institute (CMHI), Warsaw, Poland
- Dariusz Rokicki, MD, PhD — Department of Pediatrics, Nutrition and Metabolic Diseases, CMHI, Warsaw, Poland
- Milena Greczan, MD — Department of Pediatrics, Nutrition and Metabolic Diseases, CMHI, Warsaw, Poland
- Dorota Cimięga — Patient Representative
Session I
Chair: Milena Greczan, MD (CMHI), Edyta Heropolitańska-Pliszka, MD, PhD (CMHI)
09:10 – 09:40
The Role of Glycosylation in Human Biology
Prof. Marcin Czerwiński, PhD — Laboratory of Glycobiology, Hirszfeld Institute of Immunology and Experimental Therapy, Polish Academy of Sciences, Wrocław, Poland
09:40 – 10:00
CDG Through the Years: From First Discovery to Current Understanding (online)
Prof. Jaak Jaeken, MD, PhD — Center for Metabolic Diseases, University Hospital Gasthuisberg, KU Leuven, Belgium
10:00 – 10:20
An Overview of Congenital N- and O-Glycosylation Disorders and Their Mixed Forms (online)
Andrew Edmondson, MD, PhD — Division of Human Genetics, Department of Pediatrics, Children’s Hospital of Philadelphia, PA, USA
10:20 – 10:35 | Coffee Break
Session II
Chair: Dariusz Rokicki, MD, PhD (CMHI), Milena Greczan, MD (CMHI)
10:35 – 10:55
Congenital Disorders of GPI Anchor Biosynthesis
Michał Patalan, MD, PhD — Department of Pediatrics, Rare Diseases and Metabolic Medicine, Pomeranian Medical University, Szczecin, Poland
10:55 – 11:15
CDG and Cardiac Involvement
Joanna Friedman, MD, PhD — Department of Cardiac Surgery, CMHI, Warsaw, Poland
11:15 – 11:35
Linking CDG and IEI: From Theory to Clinical Practice
Edyta Heropolitańska-Pliszka, MD, PhD — Immunology Clinic, CMHI, Warsaw, Poland
11:35 – 11:55
ER Stress and the Unfolded Protein Response in CDG: Implications for Immunology and Hematology
Prof. Wojciech Młynarski, MD, PhD— Department of Pediatrics, Oncology and Hematology, Medical University of Łódź, Poland
11:55 – 12:05 | Discussion
12:05 – 12:20 | Coffee Break
Session III
Chair: Prof. Robert Śmigiel, MD, PhD (Wrocław Medical University), Milena Greczan, MD (CMHI)
12:20 – 12:35
Neurological Manifestations in CDG
Dariusz Rokicki, MD, PhD — Department of Pediatrics, Nutrition and Metabolic Diseases, CMHI, Warsaw, Poland
12:35 – 12:55
Stroke-like Episodes in PMM2-CDG: Early Evidence from European Cohorts and Transcriptomic Approaches (online)
Dr. Florencia Epifani, MD & Prof. Mercedes Serrano, MD, PhD — Pediatric Neurology Department, Hospital Sant Joan de Déu; Institut de Recerca Sant Joan de Déu (IRSJD), Barcelona, Spain
12:55 – 13:15
Renal Complications in CDG
Agnieszka Janiec, MD — Department of Pediatrics, Nutrition and Metabolic Diseases, CMHI, Warsaw, Poland
13:15 – 13:30
CDG in the Perinatal Period
Milena Greczan, MD — Department of Pediatrics, Nutrition and Metabolic Diseases, CMHI, Warsaw, Poland
13:30 – 13:40 | Discussion
13:40 – 15:00 | Lunch
Session IV
Chair: Dorota Wesół-Kucharska, MD, PhD (CMHI), Milena Greczan, MD (CMHI)
15:00 – 15:20
Diagnostic Approaches in Congenital Disorders of Glycosylation: Biomarkers and Biochemical Testing
Anna Bogdańska, PhD — Metabolic Disorders Laboratory, CMHI, Warsaw, Poland
15:20 – 15:40
Genetic Diagnostics in CDG: Opportunities and Challenges
Prof. Robert Śmigiel, MD, PhD — Department of Pediatrics, Endocrinology, Diabetology and Metabolic Diseases, Wrocław Medical University; University Center for Rare Diseases, Wrocław, Poland
15:40 – 16:00
Advances in the Treatment of Congenital Disorders of Glycosylation and Future Perspectives
Prof. Eva Morava, MD, PhD — Department of Genetics and Genomic Sciences, Icahn School of Medicine at Mount Sinai, New York, USA
16:00 – 16:15
Drug Repurposing in Rare Diseases
Ethan Perlstein, MD — Perlara, USA
16:15 – 16:25 | Break
16:25 – 16:45
The Parents’ Perspective
Dorota Cimięga — Patient Representative
16:45 – 16:55
10 Minutes with CDG CARE – Ivan Martinez Duncker, MD, ScD, Scientific Advisor, CDG CARE; Research Professor, Cell Dynamics Research Center, Morelos State University, Mexico.
16:55 – 17:10
Discussion and Closing of Day One
- Parallel children’s activities
19:00 | Dinner
Saturday, May 30, 2026 — Workshops
09:30 – 12:30 | Morning Sessions
09:30 – 09:50
Augmentative and Alternative Communication Methods
Agnieszka Warzecha, MSc — Physiotherapy Unit, Rehabilitation Clinic, CMHI, Warsaw, Poland
09:50 – 10:10
Breaking Communication Barriers: Using AAC and the MÓWik Application in Children with CDG and Complex Communication Needs
Sebastian Szufa — MÓWik
10:10 – 10:30 | Break
10:30 – 11:00
Home-Based Physiotherapy
— Physiotherapy Unit, Rehabilitation Clinic, CMHI
11:00 – 11:30
Feeding Difficulties: Practical Strategies for Working with Children
Agnieszka Warzecha, MSc — Physiotherapy Unit, Rehabilitation Clinic, CMHI, Warsaw, Poland
11:30 – 12:00
Nutritional Management in Patients with CDG
Alicja Syc, MSc; Katarzyna Chyż, MSc — Department of Pediatrics, Nutrition and Metabolic Diseases, CMHI
12:00 – 12:30
The Challenges and Rewards of Caring for a Child with a Chronic Illness
Karolina Gątarek, MSc (CMHI), Warsaw, Poland
12:30 – 14:00 | Lunch
14:00 – 17:40 | Interactive Workshops (Q&A Sessions)
14:00 – 14:30
Psychologist
TBC / Karolina Gątarek, MSc, (CMHI), Warsaw, Poland
14:30 – 15:00
Speech Therapy Agnieszka Warzecha, MSc, (CMHI), Warsaw, Poland
/ MÓWik: From Interaction to Independence: Creating a Communication Environment for a Child Using MÓWik
15:00 – 15:20 | Break
15:20 – 15:50
Speech Therapy Agnieszka Warzecha, MSc, (CMHI), Warsaw, Poland
/ MÓWik: From Interaction to Independence: Creating a Communication Environment for a Child Using MÓWik
15:50 – 16:20
Neurology Panel
Prof. Justyna Paprocka, MD, PhD — Medical University of Silesia, Poland
Dorota Wesół-Kucharska MD, PhD, Magdalena Kaczor, MD, PhD — CMHI, Warsaw, Poland
16:20 – 16:40 | Break
16:40 – 17:10
Gastroenterology / Metabolic Pediatrics
Anna Wiernicka, MD, PhD, Milena Greczan, MD — CMHI, Warsaw, Poland
17:10 – 17:40
Metabolic Pediatrics / Gastroenterology (continued)
Dr. Milena Greczan, MD, Dr. Anna Wiernicka, MD, PhD — CMHI, Warsaw, Poland
- Parallel children’s activities