On July 25, 2025, Africa will mark a historic turning point in health equity with the official launch of the Rare in Africa Initiative in Johannesburg, South Africa. Together with our global partners and in collaboration with African First Ladies, leading researchers, health experts, and committed advocates, the Petronille Healthy Society is proud to unite the continent in addressing one of its most urgent and overlooked health challenges: rare diseases and pediatric cancers.
The Rare in Africa Initiative is not just a campaign. It is a bold, multi-year movement to accelerate research, promote early diagnosis, expand access to treatment, and support the children and families too often left behind. It will also advocate for forward-thinking policy reform to strengthen national healthcare systems and ensure that no one is denied care because their condition is rare.
At the heart of the Rare in Africa Initiative lies an unprecedented commitment: the launch of a $100 million funding coalition, Africa’s largest-ever coordinated investment to transform rare disease diagnostics and treatment access. This bold financial mobilization will dismantle systemic barriers, equip regional centers of excellence, and ensure that no child faces a rare disease without hope. Simultaneously, we are spearheading high-level partnerships with African governments to permanently integrate rare diseases into national health agendas—locking in structural reforms that guarantee long-term funding, specialist training, and equitable care frameworks. This dual approach—massive immediate investment coupled with lasting policy change—ensures that the era of invisibility for rare disease patients in Africa ends now. The coalition represents more than funding; it is a continental pact to turn cutting-edge science into tangible survival, transforming so-called “orphan diseases” into national health priorities. Every dollar pledged is a step toward rewriting what’s possible for Africa’s most vulnerable patients.
A cornerstone of this transformation is the creation of Africa’s first Rare Disease Database a continent-wide data infrastructure designed to capture patient information, track genetic and demographic trends, inform clinical trial design, and support national health strategies through deep, longitudinal insights. This database will serve as both a scientific engine and a policy tool: empowering pharmaceutical partners with previously inaccessible population-level insights while enabling governments to implement scalable, evidence-based models of care. It will accelerate trial recruitment, drive regulatory alignment, and fundamentally reshape how rare diseases are studied and treated across Africa.
With the powerful presence and leadership of African First Ladies, the Rare in Africa Initiative stands as a united continental commitment to transform care for rare diseases and pediatric cancers. This initiative is designed to benefit every country in Africa by fostering collaboration across borders—ensuring that all nations, regardless of size or resources, have access to shared knowledge, innovation, and support systems.
From the North to the South, and from the East to the West, African First Ladies are joining forces to champion equitable healthcare solutions, amplify awareness, and drive national commitment to early diagnosis and treatment. Through this partnership, we will empower local healthcare systems, train frontline professionals, and establish regional hubs that deliver life-saving resources, even in the most remote communities.
Together, with the First Ladies at the forefront, we are not just building programs, we are building legacy. A legacy where no child is left behind because their disease is rare.
Despite global advancements in medicine and diagnostics, individuals across Africa affected by rare diseases and pediatric cancers continue to face disproportionate health disparities. These conditions remain largely absent from national health priorities, resulting in limited access to timely diagnosis and appropriate care. Epidemiological estimates indicate that fewer than 10% of rare disease patients on the continent receive an accurate diagnosis, and survival rates for children with rare conditions fall below 5%—largely due to delays in detection, lack of treatment infrastructure, and minimal public awareness.
The Rare in Africa Initiative seeks to disrupt this status quo. Anchored by a $100 million funding coalition, the initiative is a bold, continent-wide commitment to structural transformation. Its core priorities include the establishment of diagnostic networks, equitable models of care delivery, investment in research and capacity-building, and evidence-based health policy integration. The goal is to ensure that no child is left behind because their disease is rare or their geography underserved.
With the world’s youngest population, a growing pool of talented scientists and clinicians, and expanding regional health networks, the continent holds untapped potential to transform how rare diseases and pediatric cancers are diagnosed and treated globally. The Rare in Africa Initiative is designed to unlock this potential by fostering collaboration across borders, sectors, and disciplines. It will build a dynamic framework that connects African research institutions with leading global centers of excellence, biotech innovators, AI and data science pioneers, and philanthropic partners.
By investing directly in Africa-based research and clinical trials, the initiative will accelerate the discovery of new treatments tailored to the continent’s unique genetic and environmental contexts. It will also promote open data platforms, strengthen regulatory capacity, and support the training of a new generation of local researchers and medical professionals equipped to lead this effort.
The initiative is also committed to strengthening regional hubs—Centers of Excellence in rare disease and pediatric cancer care—that will serve as beacons of hope, knowledge, and community-centered innovation. These hubs will not only advance science, but ensure that African voices, experiences, and leadership remain central to solving global health challenges.
The RARE IN AFRICA Initiative is a unique opportunity for biopharmaceutical companies, research institutions, and global investors to make a lasting impact. By funding groundbreaking research and innovation in Africa, you can help unlock new treatments, improve access to life-saving therapies, and address critical healthcare gaps. Africa is a continent of immense potential, with untapped opportunities for research and development.
Your investment in the RARE IN AFRICA Initiative will not only advance scientific discovery but also ensure that children and families across the continent have access to the care they deserve. Together, we can fund clinical trials, support cutting-edge research, and bring innovative treatments to underserved populations. This is your chance to be part of a movement that transforms lives and builds a healthier future for millions. Join us in funding groundbreaking research to better understand and treat rare pediatric cancers and rare diseases.
The Advocacy and Policy Forum is dedicated to discussing the critical policy issues affecting the rare disease community. This forum will feature discussions with policymakers, advocates, and legal experts who are working to influence legislation and policy at the local, national, and international levels. Topics will include healthcare access, funding for research, and regulatory challenges.
Attendees will learn about the latest policy developments and gain practical advice on how to engage with policymakers and advocate for meaningful change. The forum provides a platform for discussing strategies to overcome barriers and drive policy initiatives that benefit the rare disease community.
By participating in these discussions, attendees can help shape the future of rare disease advocacy and ensure that the voices of patients and caregivers are heard.
The launch of the Rare in Africa Initiative on July 25, 2025, in Johannesburg marks more than a milestone, it marks a continental movement to transform care for people affected by rare diseases and pediatric cancers. With the world’s youngest population and a rapidly expanding health sector, Africa is poised to lead in innovation, equity, and impact. This is a defining moment to act, to invest, and to shape a future where no one is left behind because their condition is rare.
The Rare in Africa Initiative offers corporate partners unprecedented access to Africa’s fastest-growing medical market—supported by streamlined regulations, AI-driven efficiencies, and government-backed scaling. Your sponsorship unlocks exclusive branding rights across different nations, premium visibility at the landmark launch, and direct influence in a $200B+ emerging health economy. It is not just an opportunity to give, it is an opportunity to grow, to lead, and to leave a legacy that transcends borders.
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