The Patient Advocacy & Engagement team at Kiniksa champions the patient perspective and acts as a liaison between our company and members of the patient, caregiver, and advocacy communities. We collaborate with patient advocacy groups and advocates around the world to help empower and educate people affected by serious and debilitating diseases. We also work with patient communities to increase disease awareness, accelerate time to diagnosis, and provide education and support. Our employees take part in advocacy and community events throughout the year to help raise awareness and support people living with serious diseases.
Programs and Resources
Created in collaboration with people suffering from recurrent pericarditis, the Heart of Pericarditis provides educational information and resources for the community. The website includes podcasts and videos featuring people who share their experience of living with this debilitating condition.
With input from people living with recurrent pericarditis, patient advocacy group leaders, and experts in the field, Kiniksa created RESONANCE: a voluntary, patient-powered registry and network of physicians and researchers dedicated to advancing research efforts in recurrent pericarditis. The registry is an observational research study, meaning that physicians and participants living with recurrent pericarditis will report data over time to help us understand how the disease and severity of symptoms may change long-term.