Ghent, September 26, 2026 - The very first joint patient day by BE.Amycon and Amybel was held today at UZ Gent. Patients engaged directly with doctors, researchers, and healthcare providers about amyloidosis, a rare disease often recognized too late. The organizations aim to share knowledge and experiences, foster closer connections between patients and caregivers, and strengthen the collaboration needed to improve diagnosis, treatment, and quality of life.
Attendees gained insight into research and diagnostics through demonstrations. These showcased how potential amyloidosis samples are processed in the pathology lab, how mass spectrometry aids in detecting and identifying involved proteins, and how digital pathology is used for detailed tissue analysis, making the complex diagnostic journey tangible for patients and their loved ones.
Amyloidosis is a group of rare disorders where misfolded proteins accumulate in organs, potentially causing severe health problems. Its symptoms are often vague and diverse, leading to frequent underdiagnosis and years-long diagnostic odysseys for many patients.
BE.Amycon, an initiative supported by VIB, and Amybel, the Belgian patient association, were established to address these challenges. Prof. Joost Schymkowitz and Prof. Frederic Rousseau from VIB-KU Leuven emphasized the necessity of collaboration among clinicians, researchers, and patients for relevant research and practical solutions.
Within BE.Amycon, fundamental knowledge on protein misfolding is combined with the development of diagnostic technologies. Prof. Amélie Dendooven, a pathologist at UZ Gent, explained that close collaboration with hospitals allows for the evaluation of diagnostic techniques on patient samples, leading to faster and more precise diagnoses.
Guy Lippens, chairman of Amybel and a patient himself, stressed that a correct diagnosis should not depend on luck. He advocates for better registration of amyloidosis to assess the disease's scope and organize specialized care.
Patients like Kathy (57) and Achiel (75) found the day to be a source of recognition and hope. Caregiver Emilie (26) found the event valuable for supporting her mother, especially after a period where euthanasia was considered but treatment improved.
The patient day marks the beginning of a structured collaboration to actively involve patients in research and care, aiming to build a Belgian expertise network for faster diagnostics and improved support.
