BE.Amycon - project
Project
The BE.Amycon aims to establish a Belgian center of expertise for people with peripheral amyloidosis. Peripheral amyloidosis is a group of life-threatening, rare diseases that are characterized by the accumulation of proteins in the body. This can lead to heart or kidney failure and other serious symptoms. The center of expertise will enable faster diagnosis, provide access to new treatments, create more awareness and provide better guidance for patients. This center will also conduct research into new methods of diagnosis and treatment.
Improving care for patients
A network of physicians and nurses will coordinate and standardize care for patients with peripheral amyloidosis by developing guidelines for diagnosis and treatment. They will also establish educational programs to teach healthcare providers to recognize symptoms.
Patient support groups
The center of expertise will establish patient support groups to help people with peripheral amyloidosis by:
- connecting patients with peers
- providing information on how patients can better manage their symptoms
- helping patients' families with support for the burden of care
These groups will also help raise awareness about peripheral amyloidosis among more people and healthcare professionals.