Pictured on the left-, Alanna Miller (Global Programmes Manager RDI), Dr Kirsten Johnson, and Flaminia Macchia (Interim Chief Executive RDI); Pictured top center-Kirsten with Dr Ritu Jain (RDI Council Director); Pictured bottom center-Kirsten with Diego Gil Cardozo and Kelly du Plesis (RDI Council Directors)

At the 79th World Health Assembly in Geneva last week, FraXI’s president Dr Kirsten Johnson led a side event as part of her role as Chair of Rare Diseases International (RDI). The RDI side event brought together policymakers, patient advocates, industry leaders, researchers, and global health stakeholders for a critical global conversation on building inclusive, people-centred health and social systems that ensure Universal Health Coverage (UHC) leaves no one behind.

The event discussed rare conditions as a catalyst for global health transformation, where panel members also took the opportunity to give interventions on 6 topics debated at the assembly. Kirsten took this opportunity to draw attention to the importance of embedding holistic care in national health services as part of the UHC as a pathway to support everyone living with Fragile X Syndrome around the world. 

Kirsten noted: “Mental health, primary care, UHC, maternal, infant and young-child nutrition, well-being and health promotion, and health in the 2030 Agenda for Sustainable Development are all transversal topics in which rare diseases need to be embedded. And as we improve rare disease provision for all, through the Global Action Plan for Rare Diseases, we improve health provision for everyone. Joining up care, improving diagnosis, enabling access to treatment, genomics, precision medicine, etc., are all topics in which rare diseases can truly be a catalyst for global health transformation”

The World Health Assembly Resolution for Raret was supported by a coalition of over 275 stakeholders from all areas of the rare disease ecosystem working together to achieve a future where no one gets left behind. 

FraXI is proud to call Kirsten our president, and we are endlessly in awe of all the tireless work she does to bring the voices of the community of those living with rare conditions to the forefront of global conversations about them.