Belgian collaboration drives new momentum in amyloidosis care and research 

Leuven and Bruges, October 23, 2025 – Systemic amyloidosis is a little-known but increasingly significant group of age-related diseases, with a major impact on patients and their families. ​ The disease is still too often recognized too late or not at all. In Belgium, patients, clinicians, and researchers are now joining forces. The patient association Amybel and the VIB Grand Challenges project BE.Amycon formed an alliance to accelerate diagnosis, strengthen research into new treatments, and build a national network of expertise. The collaboration kicks off with two benefit concerts (24 and 26 October) by the Philharmonisches Streichquintett Berlin, with proceeds going to the newly established Fund for Amyloidosis Research & Patient Empowerment. 

Urbain Boutelegier, Amybel: “October 26 is World Amyloidosis Day, the perfect moment to draw attention to this little-known but serious condition. Living with amyloidosis often feels like being invisible. That is why launching this Fund, and taking initiatives such as the benefit concerts, means so much to us.” ​ ​ 

Amyloidosis: an urgent need for better care 

As an age-related condition, amyloidosis has a far greater impact on society than its ‘rare disease’ label suggests. With an ageing population, the number of patients will only continue to rise. Amyloidosis occurs in different forms, all caused by protein misfolding and accumulation in vital organs. Symptoms vary, from fatigue and swelling to difficulty swallowing or shortness of breath but always have a profound impact on patients’ quality of life. ​ 

Diagnosis is still complex, invasive, and often delayed. Until recently, Belgian patients had to seek support abroad and clinicians relied on foreign labs for confirmation in uncertain cases. That is not unusual for rare diseases, but it underlines the importance of clear, centralized expertise in Belgium so that patients can be referred quickly and receive the right care. 

Prof. Michel Delforge, BE.Amycon , UZ Leuven: “Physicians still too often overlook amyloidosis. Timely and accurate diagnosis and follow-up are essential to improve both life expectancy and quality of life. That’s why earlier detection, better diagnostic tools, and structured follow-up are literally vital.” 

Building solutions together 

To change the outlook for patients with amyloidosis, we urgently need greater awareness of the condition among both the public and clinicians, better diagnostic and follow-up tools, and focused research into new therapeutics. In Belgium, two independent initiatives arose almost simultaneously: Amybel, the national patient organization representing more than 170 patients across Belgium, offering guidance, peer support, and reliable information; and BE.Amycon, a VIB Grand Challenges project driven and coordinated by ​ Prof. Frederic Rousseau, Prof. Joost Schymkowitz and Dr. Rodrigo Gallardo (VIB-KU Leuven Center for Brain & Disease Research), together with KU Leuven, UZ Leuven, UGent, and UZ Gent. Be.Amycon is already advancing innovative diagnostics and therapeutics while uniting researchers and clinicians. 

Today, Amybel and BE.Amycon join forces to lay the foundations for faster diagnoses, better treatments, and stronger networks of care, where patients are fully heard and supported. 

Prof. Frederic Rousseau, BE.Amycon (VIB/KU Leuven): “Patient support and science must go hand in hand if we want to make real progress. We need a national expertise network where clinicians from different disciplines can identify and guide patients earlier. That expertise must be more visible and better connected, so that clinical care and research reinforce each other and new results can benefit patients sooner.” 

A fund to drive change 

Amybel and BE.Amycon have jointly established the Fund for Amyloidosis Research & Patient Empowerment, managed by the King Baudouin Foundation (KBS). The Fund aims to pool resources and create sustainable impact by supporting innovative research and patient-focused initiatives, providing a unique opportunity to finally make a lasting difference for patients in Belgium. 

Under the title “Echo for Hope”, the world-renowned Philharmonisches Streichquintett Berlin will perform in Leuven (24 October 2025) and Bruges (26 October 2025) to celebrate World Amyloidosis Day. These benefit concerts will provide the fund with its first financial boost. 

Urbain Boutelegier, Amybel: “For patients, this collaboration and the launch of the fund represent hope. Investing in research into the roots of amyloidosis is essential, as it is the only way to develop new diagnostics and treatments. This initiative unites the expertise of patients, clinicians, and researchers in a way that can truly make a difference.” 

Interviews and additional information  

Patients, clinicians, and researchers involved in this initiative are available for interviews or testimonials. 

Press contacts: 

Patient testimonials: 

Expert insights from research and clinical practice 

The Fund 

The Fund for Amyloidosis Research & Patient Empowerment is managed by the King Baudouin Foundation (KBS). More info 

Benefit concerts 

Benefit concerts ‘Echo for Hope’ - A musical firework against amyloidosis with the Philharmonisches Streichquintett Berlin: www.amybel.be 

More info: www.amybel.be ​ 

About Amybel 

Amybel is the Belgian patient organization for amyloidosis. The association represents more than 170 patients across the country, providing them with information, peer support, and practical guidance. Amybel aims to empower patients and make their voices heard, helping to advance care and research on amyloidosis in Belgium. www.amybel.be ​ 

About BE.Amicon 

BE.Amycon envisions a comprehensive network of excellence for amyloidosis, driven by a collective commitment to pioneering research, patient care, and interdisciplinary collaboration. ​ 

About VIB

VIB’s core mission is to generate disruptive insights in the molecular underpinning of life and to translate these actively into impactful innovations for patients and society. VIB is an independent research institute where some 1,800 top scientists from Belgium and abroad conduct pioneering basic research. As such, they are pushing the boundaries of what we know about molecular mechanisms and how they rule living organisms such as human beings, animals, plants, and microorganisms. Based on a close partnership with five Flemish universities – Ghent University, KU Leuven, University of Antwerp, Vrije Universiteit Brussel, and Hasselt University – and supported by a solid funding program, VIB unites the expertise of all its collaborators and research groups in a single institute. VIB’s technology transfer activities translate research results into concrete benefits for society such as new diagnostics and therapies and agricultural innovations. These applications are often developed by young start-ups from VIB or through collaborations with other companies. This also leads to additional employment and bridges the gap between scientific research and entrepreneurship. VIB also engages actively in the public debate on biotechnology by developing and disseminating a wide range of science-based information. 

More info can be found on www.vib.be.

About KU Leuven

KU Leuven is Europe’s most innovative university (Reuters) and ranks 45th in the Times Higher Education World University Rankings. As Belgium's largest university, KU Leuven welcomes 60,000 students from over 140 countries. Its 7,000 researchers are active in a comprehensive range of disciplines. KU Leuven is a founding member of the League of European Research Universities (LERU) and has a strong European and international orientation. University Hospitals Leuven, its network of research hospitals, provides high-quality healthcare and develops new therapeutic and diagnostic insights with an emphasis on translational research.

About UZ Leuven

As Belgium's largest university hospital, UZ Leuven aims to push boundaries by combining specialized care and innovative treatments with personal attention and respect for each patient. More than 10,000 passionate employees provide the best, personalized care every day. Future healthcare providers and staff receive high-quality training at UZ Leuven, with a focus on lifelong learning and innovation. As a pioneer in clinical research, the hospital also considers the patient care of the future.

About UGent

Ghent University is an open, pluralistic and socially engaged university. It is more than 200 years old, offers more than 200 programmes (including 69 English-taught master's programmes) and conducts in-depth research within a wide range of scientific domains.

Our credo is Dare to Think: we are a haven for courageous thinkers.

About Ghent University Hospital

Ghent University Hospital is one of the largest and most specialized hospitals in Flanders. Approximately 7,000 employees are committed to providing the best possible care to over 3,000 patients every day. Together with the Faculty of Medicine and Health Sciences of Ghent University, Ghent University Hospital invests in scientific research and training. In this way, the hospital is contributing to the healthcare of the future. More information is available at www.uzgent.be.