AmyBel and BE.Amycon successfully organised their first joint Amyloidosis Patient Day in Belgium, bringing together patients, healthcare professionals and researchers to share knowledge, raise awareness and strengthen collaboration around amyloidosis.
The first BE.Amycon x AmyBel Patient Day marked an important step forward for the amyloidosis community in Belgium. Held in Ghent in September 2026, the event created a valuable opportunity for patients, families, physicians and researchers to meet, exchange experiences and learn more about the disease.
Bringing the amyloidosis community together
Amyloidosis remains a rare and complex group of diseases, and improving awareness is essential to supporting earlier diagnosis and better patient care.
By joining forces, AmyBel, the Belgian Amyloidosis Patient Association, and BE.Amycon aimed to build stronger connections between the people living with amyloidosis and the medical and scientific communities working to improve its diagnosis and treatment.
The Patient Day offered participants an opportunity to learn more about amyloidosis, current research and diagnostic approaches, while also creating space for discussion and the sharing of personal experiences.
This first joint initiative received very positive feedback from both participants and organisers.
Raising awareness beyond the Patient Day
The impact of the event extended beyond those attending in person.
The collaboration between AmyBel and BE.Amycon and the Patient Day received coverage across several Belgian media channels, including VRT NWS, Radio 1 and HLN, helping bring greater public attention to amyloidosis and the challenges faced by people living with a rare disease.
This increased visibility is particularly important for a condition for which the journey to diagnosis can still be long and complex.
The initiative also contributes to AmyBel’s ongoing work to reach and support more patients. The Belgian association now brings together a growing community of more than 340 people.
Collaboration to improve the patient experience
The success of this first Patient Day demonstrates the value of collaboration between patient organisations, clinicians and researchers.
For AmyBel, working alongside BE.Amycon provides another way to increase awareness among both patients and healthcare professionals while creating additional value for the amyloidosis community.
Sharing knowledge, improving communication and strengthening connections between patients and experts can all contribute to a better understanding of amyloidosis and, ultimately, better support for those affected by the disease.
Looking ahead to 2027
Following the positive response to this first edition, the collaboration is set to continue.
A new BE.Amycon x AmyBel Patient Day is already planned for Leuven in 2027, providing another opportunity to bring the Belgian amyloidosis community together.
At Amyloidosis Alliance, we are delighted to see our member organisation AmyBel developing initiatives that strengthen patient engagement, increase awareness and encourage collaboration across the amyloidosis community.
We congratulate AmyBel, BE.Amycon and everyone involved in making this first joint Patient Day a success.