Shining a Light on Rare Pediatric Cancers in Africa

On July 25, 2025, Africa will come together for a historic milestone as the RARE IN AFRICA Initiative is set to be officially launched in Johannesburg, South Africa. Led by the Petronille Healthy Society, in collaboration with African First Ladies, leading researchers, healthcare experts, and advocates from across the continent, this transformative initiative will shine a much-needed light on the challenges of rare pediatric cancers and other rare diseases affecting countless children and families. The initiative aims to drive groundbreaking research, promote early diagnosis, improve access to treatment, and provide vital support to those impacted. It will also advocate for policy changes to strengthen healthcare systems and reduce the burden of rare diseases.

This launch marks the beginning of a united effort to create hope, inspire action, and transform lives across Africa. Together, we can ensure no child is left behind in the fight against rare pediatric cancer. Join us as we embark on this journey of change and compassion.

Educational Workshops and Panels

This multi-day event, hosted by the Rare Disease Legislative Advocates (a program of the EveryLife Foundation for Rare Diseases), brings together rare disease advocates from across the country to make their voices heard by their Members of Congress. Participants are educated on policy proposals impacting the rare disease community and provided opportunities to advocate for policy changes directly to their Members of Congress. Beyond legislative advocacy, the event offers interactive workshops and keynote sessions where experts share insights on current and emerging policy challenges. The agenda is carefully designed to ensure that advocates gain practical skills for effective communication with policymakers. Further details on the event's sessions and schedule can be found on the official website.