Lasting change in health equity starts with the people it is meant to serve. That’s why we collaborate with patients, healthcare providers, global partners, and policymakers to implement inclusive, locally driven solutions. Driven by our mission and unwavering in our commitment, we work to address systemic disparities and build equitable health systems that leave no one behind.
Our mission is to support the rare disease community and promote health equity through advocacy, accessible care, and education.
A world where every person with a rare disease, no matter where they live, has access to timely diagnosis, quality care, and hope.
Petronille Healthy Society (PHS) embodies a set of core values that form the foundation of our mission and actions. Compassion is at the heart of everything we do; we approach our work with empathy, understanding, and a deep commitment to alleviating the challenges faced by those with rare diseases. Collaboration is another pillar of our values, as we actively seek partnerships and alliances with like-minded organizations, healthcare professionals, and advocates to amplify our impact. Advocacy is ingrained in our ethos, driving us to be vocal champions for the rare disease community, striving to influence policy changes and improve access to care.
Finally, innovation guides our approach, as we continuously explore new ideas, technologies, and strategies to address the evolving needs of those we serve.
The Rare in Africa Initiative (RAI) represents a watershed moment for the continent’s 70 million undiagnosed rare disease patients. This first-of-its-kind platform will revolutionize Africa’s rare disease landscape by bridging three critical gaps: between patients and policymakers, between research and implementation, and between global standards and local realities.
By participating, you become part of a movement that will establish Africa’s first unified rare disease framework – one that accelerates diagnoses through AI registry, expands treatment access accross the continent, and embeds patient voices in health policy across all participating nations.
At the heart of Africa’s rare disease crisis lies a fundamental disconnect: while 80% of rare conditions are diagnosable, fewer than 20% of African patients ever receive answers. RAI’s Policy Summit directly addresses this by creating structured pathways for change. Where traditional advocacy often stops at awareness-raising, our summit ensures concrete outcomes through pre-arranged working sessions with health ministers, designed to translate personal testimonies into immediate policy actions.
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