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What is Nngwe?

The Nngwe Project, also known as the ONE Project, is a ground-breaking initiative by DIPLOMICS (DIstributed PLatform in OMICS), that will address the plight of rare disease, and in particular undiagnosed rare disease patients in South Africa. This initiative is funded by the Department of Science and Innovation and will support health goals as outlined in the National Development Plan 2030. It is also aligned with the United Nations 2030 agenda for sustainable development, specifically focusing on Principle Two – ensuring that no ONE is left behind.

South Africa, and other committed member states, have pledged to eradicate poverty, end discrimination and exclusion, and reduce inequalities and vulnerabilities. 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.

Our Mission

The Nngwe Project calls upon South African clinicians and scientists to unite in the mission of improving care for rare disease patients. Despite the seemingly individual nature of rare diseases, the combined prevalence of over 6,000 described conditions presents an unrecognised 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.

THE NNGWE PLEDGE

Witnessing the challenges faced by rare disease patients, any morally conscious individual is compelled to act. By signing the Nngwe Pledge, you commit to sharing data, knowledge, and resources for the greater good. Please note that participation in Nngwe is free. Recognising that 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.

To facilitate this process, Nngwe will aim to:

Provide participants with resources, training, software, and IT infrastructure that will facilitate information sharing and communication.
Ensure compliance with ethical and privacy standards and regulations.
Ensure appropriate recognition of contributing members while fostering a culture of sharing, collaboration, and mentorship.

Join us in making a difference – because together, we can ensure that no ONE is left behind in the journey towards improved care for rare disease patients.