The Spanish Association of GSD Patients (AEEG), member of our board of patient organisations, has recently organised the 16th International Conference on GSD. The conference was held with great success on October 3–4, 2025, at the University Hospital of Getafe. The event brought together healthcare professionals, researchers, patients, and families, reaffirming its role as one of the most significant meetings in the field of rare metabolic diseases.
Over two intensive days, participants learned first-hand about the latest scientific, therapeutic, and clinical-social advances related to glycogen storage diseases (GSDs).
The congress strengthened its role as a scientific and human reference point, focusing on updated knowledge of hepatic and muscular GSDs and the development of strategies to improve patients’ quality of life.
A Space to Share Knowledge and Build Community
The congress opened on Friday, October 3, with registration and accreditation, followed by institutional welcoming remarks from representatives of the University Hospital of Getafe, the regional health authorities, and patient associations.
Opening Ceremony
The opening session on October 3 included interventions by:
- Ms. Alejandra Fuentes, President of AEEP
- Mr. Jesús Sueiro, President of AEEG
- Dr. Núria García Montes, Medical Director, University Hospital of Getafe
- Ms. Celia García Menéndez, Director General for Humanization, Patient Care, and Safety, Community of Madrid
Speakers emphasized the importance of strengthening cooperation among associations, hospitals, and institutions to advance research on rare diseases.
Scientific Advances in Neuromuscular Diseases
The first roundtable focused on respiratory involvement in neuromuscular diseases, featuring Dr. Bárbara Smith (University of Florida), Dr. Ana Hernández (Hospital 12 de Octubre), and Dr. José María Díaz (Getafe Hospital).
Next, Dr. Tomás Pinos (Vall d’Hebron Research Institute) presented the new challenges in muscular glycogenosis research, followed by Dr. David Weinstein, a global reference in gene therapy for Glycogen Storage Disease Type I, who shared insights on applying accumulated experience and knowledge to other glycogenosis types.
The day concluded with the panel “Approach to Pompe Disease”, where experts from national and international centers discussed valuable clinical findings and experiences for medical teams and families.
Watch the sessions from Friday, October 3:
- Spanish: Dr. Jordi Díaz; Dr. Barbara Kellerman Smith; Dr. Ana Hernández
- Spanish: Dr. Tomás Pinos; Dr. David Weinstein
- English: Dr. Jordi Díaz; Dr. Barbara Kellerman Smith; Dr. Ana Hernández
- English: Dr. Tomás Pinos; Dr. David Weinstein
The Importance of Nutrition, Exercise, and Continuous Training
On Saturday, October 4, the focus shifted to clinical aspects and quality of life for patients with glycogenosis.
Training and Cardiac Function in Glycogenosis
Dr. Alfredo Santalla (Pablo de Olavide University) presented the current state of physical training programs for glycogenosis, developed in collaboration with Dr. Araceli Boraita (QUAES Foundation). Dr. Boraita shared her experience as a sports cardiologist monitoring heart function through echocardiograms, addressing cardiac involvement in types III and V.
Nutrition and Clinical Management
Subsequent presentations delved into nutritional guidelines for Type III glycogenosis (Dr. Almudena Montalvo, European University of Madrid) and clinical experiences with muscular involvement (Dr. Ulrike Steuerwald, National Hospital of the Faroe Islands).
Dr. Magali Reyes (Federico Gómez Children’s Hospital of Mexico) highlighted the importance of balancing nutrition and exercise in comprehensive disease management, later moderating a roundtable discussion featuring top specialists, including Dr. Alejandro de Lucía (Complutense University of Madrid).
Watch the sessions from Saturday, October 4:
- Spanish: Dr. Alfredo Santalla; Dr. Alejandro de Lucía
- Spanish: Dr. Almudena Montalvo; Dr. Ulrike Steuerwald; Dr. Magali Reyes
- Spanish: Dr. Almudena Montalvo; Dr. Alejandro de Lucía; Dr. David Weinstein; Dr. Ulrike Steuerwald- roundtable discussion moderated by Dr. Magali Reyes
- English: Dr. Alfredo Santalla; Dr. Alejandro Lucía
- English: Dr. Almudena Montalvo; Dr. Ulrike Steuerwald; Dr. Magali Reyes
A Congress Promoting New Ways of Living with the Disease
Beyond its scientific dimension, the congress provided a human meeting space where professionals and families shared experiences, coping strategies, and future projects. The AEEG reaffirmed its commitment to training, research, and comprehensive support for people affected by glycogenosis. The success of this edition demonstrates that the synergy between science, institutions, and the community is key to continued progress. Every new research line, testimony, and exchange of knowledge strengthens the shared goal of improving the quality of life for those living with these rare diseases.
Acknowledgments and Next Steps
The Spanish Association of GSD Patients (AEEG) warmly thanks all speakers, partner entities, and participants who made this event possible.
Looking ahead, AEEG remains committed to ensuring that each new congress continues to be a space for connection, learning, and hope.
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