The Nngwe Project is a ground-breaking new initiative being launched at Rare-X 2024. Nngwe will aim to address the plight of rare disease patients in South Africa, particularly those with undiagnosed conditions.
The Nngwe Project is a collaborative effort, pioneered by DIPLOMICS (Distributed Platform in OMICS) and funded by the Department of Science and Innovation. It is aligned with the United Nations 2030 Agenda for Sustainable Development, specifically focusing on Principle Two – ensuring that no one is left behind.
“The Nngwe Project recognises the critical need for action in situations where a child is born into poverty, discrimination, and exclusion, facing the challenges of a rare undiagnosed disease that affects their life expectancy and quality, and which subjects them to a life of stigmatisation and isolation,” says Prof. Chris Vorster, Nngwe Programme Director.
The project’s mission is to unite clinicians and scientists in improving care for rare disease patients. Although individually rare, the combined prevalence of the over 6,000 described conditions presents a significant healthcare challenge. “While individual efforts by clinicians and scientists have been commendable, a coordinated, collective approach is essential to reshape the destinies of these patients,” says Prof. Vorster.
The Nngwe Project is inviting clinicians and scientists to sign the Nngwe Pledge, committing to sharing data, knowledge, and resources for the greater good. Participation in Nngwe is free, and the project will provide participants with resources, training, software, and IT infrastructure to facilitate information sharing and communication. “The diagnostic odyssey for many rare disease patients can be shortened when data is rapidly released and shared across a network of participating clinicians and scientists,” says Prof. Vorster.
The Nngwe Project will officially be launched at Rare-X 2024, the third Biennial Rare Diseases Conference, taking place in Johannesburg from February 14 to 17, 2024.