Since the launch of Nngwe at RareX in February 2024, we’ve been diligently working behind the scenes. This is the first of our updates aimed at keeping you informed about new developments within Nngwe and providing an opportunity for members to engage.
Focus on Genomics with Broader Vision
Initially, Nngwe is concentrating on genomics, but our broader vision encompasses proteomics and metabolomics. We are currently establishing workflows, service level agreements with partners, and protocols for data storage and access. As discussed at RareX, it is crucial that Nngwe’s data remains accessible to all members, who must reciprocally share their data and expertise. However, we are mindful of various ethical and legal considerations, including compliance with POPIA regulations. We are actively seeking professional assistance, though finalising everything may take several more months.
Reconsidering Structure and Governance
We are also reconsidering Nngwe’s structure and governance, leaning towards establishing it as a not-for-profit organisation. This decision is driven by our commitment to ensuring continuity, sustainability, and diverse funding sources. Simultaneously, we aim to create a framework that maximises accessibility for clinicians and scientists while leveraging research opportunities and funding from Nngwe members. Our approach draws inspiration from the collaborative efforts seen in astrophysics in South Africa and globally, where large-scale data sharing enhances opportunities and attracts substantial funding.
Upcoming Policy Document
In the coming months, we will release the Nngwe policy document outlining its governance structure, service offerings, and utilisation guidelines.
Videos on Rare Disease Patients
Keep an eye out for two upcoming videos showcasing the diagnostic odyssey of rare disease patients. Updates will be shared via LinkedIn – be sure to follow our page if you have not done so yet.
Website Updates and Support Pledges
We have also made some changes to the website, and Rare Disease Advocates can now pledge their support too. Please help us spread the news and encourage your like-minded colleagues to sign the pledge as well.
Presence at SASHG BIENNIAL CONGRESS
Nngwe will be present at the SASHG BIENNIAL CONGRESS, where we look forward to meeting you and showcasing our workflow. Throughout our endeavours, we remain steadfast in our commitment to prioritising the patient above all else. This principle is fundamental to Nngwe and will always guide our actions.
Thank you for your continued support and engagement.