Wafaa M Rashed Shares Marianne Gush’s Blog on Advancing Equity in Rare Disease Care in Africa
Wafaa M Rashed, Faculty Lecturer of pharmacy at the Ahram Canadian University, shared a post on LinkedIn:
“Diagnosis as Dignity: Advancing Equity in Rare Disease Care in Africa
What if giving a name to a rare disease wasn’t just a medical milestone—but a matter of justice?
In this powerful new blog, Dr. Marianne Gush, a Doctor of Psychology and Qualitative Researcher with the Rare Disease Genomics research group at Stellenbosch University- South Africa, explores how timely genetic diagnosis can restore dignity, direct care, and reshape lives for people with rare diseases in South Africa and beyond.
‘Diagnosis isn’t just data—it is dignity. Without it, people are left in silence, excluded from care, and denied answers.’
In this blog, you’ll discover:
- The harsh reality of diagnostic delays across African health systems
- Why rare disease care is a global health issue—and a local equity challenge
- How South Africa’s Undiagnosed Disease Programme is breaking new ground
- The transformative role of genetic testing in clinical decision-making
- Four urgent policy pathways to ensure no African is left undiagnosed
This is more than science—it’s a call for health systems that see, value, and serve people with rare diseases, no matter where they live.
Published as part of PAPERI’s commitment to amplifying African expertise in genetics and genomics policy, this piece reflects the human heart of research-driven advocacy.
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