Today (Tuesday 28 February) marks Rare Disease Day. Mathieu Boudes and Virginie Hivert from PFMD member organisation EURORDIS-Rare Diseases Europe highlight two flagship activities to make sure the voice of rare disease patients is heard.
Rare Disease Day primarily aims to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. This awareness is an essential step in advocating for patients with rare disease and is also one of the aims of EURORDIS-Rare Diseases Europe – an alliance of 738 rare disease patient organisations in 65 countries. EURORDIS-Rare Diseases Europe works across borders and disease conditions to improve the lives of people living with a rare disease and in the 20 years since being established has made significant progress toward this overarching aim. A big focus of our work is to optimize patient engagement in research, in healthcare services, in medical and social care and in the lifecycle of medicinal products.
One of the challenges for rare diseases is building a community where there are only few patients with each condition – so coming together, connecting and learning from experience is critical for us. We have included two flagship programmes into PFMD’s patient engagement landscape global mapping and networking tool to share our experiences and efforts but also to connect and learn from others in the patient engagement community who have shared their own initiatives on the online platform. We can get inspiration by using the tool to find out what’s happening in other non-rare disease areas.