BE.Amycon: A united front against Amyloidosis in Belgium
October 25, 2024
For World Amyloidosis Day on 26 October, we introduce BE.Amycon, a new VIB Grand Challenges initiative uniting scientists, doctors, and patients across Belgium to address the challenges posed by amyloidosis. We interview Rodrigo Gallardo, BE.Amycon Project Lead, and other core members of the network to find out more.
Proteins are the main biological workhorses in our bodies. They are involved in everything from brain health to muscle building. Sometimes, though, these proteins stick together and form unwanted clumps - the plaques and tangles in Alzheimer's disease are famous examples. Amyloidosis is a rare condition characterized by the accumulation of abnormal proteins called amyloids. These protein aggregates form fibrils that build up in tissues, affecting normal cellular processes and causing damage to the nervous system.
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Enter BE.Amycon is a new VIB Grand Challenges initiative inspired by research in the Switch lab at the VIB-KU Leuven Center for Brain & Disease Research. It brings together clinicians, researchers, and patients across Belgium to tackle the challenges posed by amyloidosis. Their goal is to establish a collaborative network dedicated to enhancing the diagnosis, treatment, understanding, and awareness of this disease.
The BE.Amycon project emerged from discussions between Joost Schymkowitz and Frederic Rousseau of the Switch lab, and Prof. Michel Delforge. They identified the needs and opportunities for systemic amyloidosis patients in Belgium. Teaming up with Prof. Impens and Prof. Dendoven from UGent and UZ Gent, they launched BE.Amycon to address these gaps.
"In Belgium, we have a wealth of amyloidosis expertise – world-class scientists, brilliant clinicians, and a strong patient community – but we don't have a solid framework in place to bridge these pockets of knowledge and foster communication between all stakeholders." Rodrigo Gallardo, Project Leader of the BE.Amycon project, explains. "This is where BE.Amycon comes in."
Rodrigo has been researching amyloidosis for over 15 years. He completed a PhD in Biotechnology Engineering at Vrije Universiteit Brussel, Postdoctoral Fellowships in Structural Biology at VIB and the University of Leeds, and was Principal Scientist at Aelin Therapeutics, a Belgium-based start-up developing technology to target protein aggregation. He couldn't be working in the field at a more exciting time: the cryo-electron microscope, which won the Nobel Prize in Chemistry in 2017, transformed the landscape of amyloidosis research, as it finally allowed researchers to determine the structure of amyloids and challenge long-standing hypotheses about how they worked.
Despite his vast scientific experience, Rodrigo's priorities began shifting after witnessing the importance of patient outreach and advocacy during his time in the UK. "I became interested in harnessing all the knowledge I'd garnered from researching amyloids in the lab for many years into generating therapies that could eventually help people with amyloidosis." Rodrigo shares. "I joined BE.Amycon because one of its core pillars is working towards designing and implementing technology that can determine which kind of disease a patient has, which will in turn enable them to receive the treatment they need."
To achieve this goal, the importance of collaboration between clinicians, researchers, and patients cannot be overstated. "In order to analyze data and generate valid and reliable insights into disease mechanisms, scientists require a large amount of patient samples," Alicia Colla, a PhD student at the VIB-KU Leuven Center for Brain & Disease Research and part of the BE.Amycon network, explains. This presents a problem: amyloidosis is a rare disease, with an estimated 1 patient for every 300,000 of the population. In Belgium, this amounts to approximately 100 cases of amyloidosis each year, with only around 50% of these cases being caught and diagnosed by doctors.
"By the time you break down the numbers, you're looking at an estimated 15 amyloidosis patients a year from each of the major hospitals in Belgium." Annelore Vandendriessche, a PhD student at UGent and part of the BE.Amycon network, adds. "In short: that's not a lot of samples. We must try to encourage as many of these patients to donate samples if we're to collect enough data to make progress in understanding the biological underpinnings of this disease."
To this end, it's crucial to have buy-in from the patient and the medical community. For this to happen, the scientific process and researchers’ need for samples must be communicated in an accessible and transparent way. "If patients and their treating physicians don't understand what we're trying to do, we won't have enough sample donations to conduct the research needed to develop potential new therapies." Michel Delforge, Haematologist at UZ Leuven and partner of the BE.Amycon network, emphasizes.
To foster this engagement with the amyloidosis community, a key player in the BE.Amycon network is AmyBel, the Belgian Amyloidosis Patient Association. AmyBel was founded earlier this year, when three patients who suffer from different forms of systemic amyloidosis banded together to form an organization not only for, but also by patients. Its goals are to provide clear and accurate information to patients, encourage connection between patients and a broader network, and promote and support scientific research. Since its inception, AmyBel has already gathered 75 members, illustrating the growing need for a strong patient community.
Denis Wolfs, Secretary of AmyBel, highlights the complexity of amyloidosis and the many challenges patients face. "There is an urgent need for more awareness, recognition, treatment options, and public understanding. Patients need a platform to discuss their health issues and access support. At AmyBel, we believe amyloidosis is a dynamic field right now, with many exciting initiatives and ambitious research projects underway. We aim to support all amyloidosis-related projects, always with the patient’s interests in mind."
"Despite exciting advancements in our scientific understanding of amyloidosis, and the importance of that in working towards a cure, nothing can compare to the value of exchanging stories of lived experience with other members of the amyloidosis patient community." Rodrigo Gallardo acknowledges.
Through collaborative efforts, cutting-edge research, and patient-centric approaches, BE.Amycon aims toward a better understanding, diagnosis, and treatment of this complex disorder. As we commemorate World Amyloidosis Day, we celebrate the bridge-building vision of BE.Amycon and look forward to what its future holds.
This project has received funding within the Grand Challenges Program of VIB. BE.Amycon is a collaboration between VIB, KULeuven, UZLeuven, UGent and UZGent.
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