Thousands of people around the world, of all ages, are affected by an autoinflammatory disease. Many of these diseases manifest themselves in the first months or years of life, but in other cases, they have a later onset, some not even until adulthood.
Because they are rare, they are hard to diagnose. However, the delay in diagnosis has more to do with the lack of awareness among the medical community.
We provide help and emotional support to the parents and families of children with an autoinflammatory disease, as well as adult patients. Autoinflammatory diseases are often very painful and debilitating conditions. Due to the general lack of knowledge and understanding of these diseases, patients are often ignored and not taken seriously. This clearly has a massive impact on the patient's quality of life. This leaves patients often feeling neglected, disbelieved, vulnerable and isolated.