RaDDA Founder Calls for Urgent Policy Reform, Rare Disease Registry in Zimbabwe

By Evans Jona

BULAWAYO — THE founder of the Rare Diseases and Disabilities Foundation Africa (RaDDA), Tinotenda Mudarikwa, has called for urgent government action to address critical policy gaps, health service challenges, and deep-rooted social misconceptions affecting people living with rare diseases and disabilities in Zimbabwe and across Africa.

In an exclusive interview with Post On Sunday, Mudarikwa revealed that his personal experience living with a rare congenital condition — anorectal malformation — inspired him to establish RaDDA, an advocacy organisation championing the rights of individuals living with often invisible and marginalised conditions.

“I was born with no anal opening, a condition that affects one in every 5,000 live births. For over 20 years, I lived with a wrong diagnosis because of widespread ignorance about rare diseases in our health system,” said Mudarikwa.

He stressed that while there have been strides in disability advocacy, Zimbabwe still lags in legislative reform, healthcare capacity, and public awareness on rare conditions and invisible disabilities.

Mudarikwa described the country’s primary disability legislation — the Disabled Persons Act of 1992 — as outdated and inconsistent with international disability rights standards such as the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), to which Zimbabwe is a signatory.

“Our institutional frameworks remain weak. The current National Disability Board lacks independence and is essentially dormant. The disability bill being debated in Parliament must not be a cosmetic review of the old Act — we need a real, transformative legal framework,” he said.

One of RaDDA’s foremost advocacy priorities is the establishment of a national rare diseases registry under the Ministry of Health and Child Care. Mudarikwa bemoaned the absence of official data on rare diseases in Zimbabwe, despite over 6,000 such conditions having been identified globally.

“We need a functional national registry that tracks all rare disease cases in Zimbabwe. It’s impossible to plan healthcare services and policies for conditions we don’t officially acknowledge or record,” he said.

Mudarikwa also spotlighted the daily struggles faced by people with disabilities in public spaces, particularly in accessing public transport. He described how wheelchair users and individuals on assistive devices are often mistreated by public transport operators.

“Imagine a lady on a wheelchair being mishandled by touts while trying to board a bus. It’s a painful, degrading reality we have to confront. Public transport systems must be redesigned to accommodate people with disabilities in a dignified manner,” he said.

Looking ahead, Mudarikwa called for a 10% disability employment quota in Zimbabwe’s public service sector and the creation of dedicated disability desks in every government department. He stressed the importance of inclusive education, especially for children with disabilities in rural areas.

“Education is a basic human right for every child, disability or not. We want to see every child with a disability — especially those in marginalised communities — accessing education and government protection,” he said.

One of the greatest challenges facing RaDDA and other disability advocacy groups is the absence of dedicated government funding. Mudarikwa said the current social welfare system offers minimal and sporadic support, with people living with disabilities receiving as little as US$10 every few months.

“We need a national budget line specifically for rare diseases and disabilities. These communities deserve consistent, meaningful support — not token assistance,” he said.

In the next decade, Mudarikwa envisions a Zimbabwe where the rights of people with disabilities and those living with rare diseases are integrated into national development priorities, rare diseases are formally documented, and inclusive social services are accessible to all.

“Together with fellow advocacy organisations, RaDDA will fight for a Zimbabwe where no one is left behind — whether they live in a city or the remotest part of the country,” he pledged.

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