Introducing the Nngwe Project: Enhancing Rare Disease Care in South Africa

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Introducing the Nngwe Project: Enhancing Rare Disease Care in South Africa

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.

MBirSA Membership

1. Introduction

This document sets out the governance framework for membership to the Medical Biorepositories of South Africa (MBirSA). It defines membership categories, eligibility criteria, the application process, rights and responsibilities, and terms of membership. This governance structure aims to ensure inclusive, equitable, and transparent participation in MBirSA’s activities, in alignment with its mission to support ethical, effective, and sustainable biorepositories in South Africa.

2. Categories of Membership

MBirSA offers four categories of membership:

  1. Biorepository membership
  2. Institutional membership
  3. Individual membership
  4. Associate members
  5. Observer status

2.1 Biorepository Membership

Biorepository membership is open to any biorepository operating within South Africa that supports and aligns with MBirSA’s principles and objectives.

Rights of membership

  • Eligibility to nominate representatives to MBirSA working groups and committees.
  • Opportunity to comment on and vote on any MBirSA consensus statements or other MBirSA policies developed.
  • Access to MBirSA resources, training, and capacity-building activities.

Responsibilities:

  • Commitment to MBirSA’s Code of Conduct
  • Timely payment of membership fees (if applicable).
  • Appointing a designated representative to engage with MBirSA on behalf of the biorepository.
  • To indicate their membership of MBirSA and inclusion of the MBirSA logo on the biorepository website.

2.2 Institutional Membership

Institutional membership is open to South African institutions (e.g., universities, research councils, hospitals) that oversee or house multiple biorepositories.

Becoming a member:

  • The institution applies as a single entity and designates a primary liaison.
  • All biorepositories under the institution’s auspices automatically fall under the membership.

Rights of membership:

  • Eligibility to nominate representatives to MBirSA working groups and committees.
  • Access to MBirSA resources, training, and capacity-building activities.

Responsibilities of membership:

  • Commitment to MBirSA’s Code of Conduct.
  • Timely payment of membership fees (if applicable).
  • Oversight of affiliated biorepositories’ compliance with MBirSA principles
  • Facilitation of internal coordination and communication with MBirSA.
  • To indicate their membership of MBirSA and inclusion of the MBirSA logo on the institution’s website.

2.3 Individual Membership

Individual membership is open to professionals, researchers, ethicists, policy experts, or community advocates with a demonstrated interest in medical biorepositories in South Africa.

Rights of membership:

  • Eligibility to nominate themselves to MBirSA working groups and committees.
  • Access to MBirSA resources, training, and capacity-building activities.

Responsibilities:

  • Commitment to MBirSA’s Code of Conduct.
  • Timely payment of membership fees (if applicable).

2.4 Associate Membership

Associate membership is open to individuals or institutions located outside South Africa who support the aims of MBirSA and wish to collaborate or contribute to its work.

Rights of membership:

  • Eligibility to nominate themselves to MBirSA working groups and committees.
  • Access to MBirSA resources, training, and capacity-building activities.

Responsibilities:

  • Commitment to MBirSA’s Code of Conduct.
  • Timely payment of membership fees (if applicable).
  • To indicate their membership of MBirSA and inclusion of the MBirSA logo on the website.

2.5 Observer status

A biorepository and/or institution that may be considering membership, can join as an observer for one year only.

Rights of observer status:

  • Access to MBirSA resources, training, and capacity-building activities.

Responsibilities:

  • Commitment to MBirSA’s Code of Conduct.
  • Timely payment of observer status membership fees (if applicable).
  • To indicate their membership of MBirSA and inclusion of the MBirSA logo on the website.

3. Application and Admission Process

  1. Applicants must complete the official MBirSA membership application form and submit any supporting documentation as required.
  2. All applications are reviewed by the MBirSA Steering Committee for decision.
  3. Successful applicants will receive formal notification and a welcome package, including the MBirSA Constitution and any applicable membership fees.

4. Duration and Renewal of Membership

Membership remains valid until such time as either the member or MBirSA chooses to terminate it, subject to continued eligibility, active engagement, and payment of membership fees (if applicable).

5. Termination or Suspension of Membership

Membership may be suspended or terminated if:

  • The member is found to be in serious breach of MBirSA’s Constitution or Code of Conduct by the Steering Committee.
  • The biorepository or institution is no longer operational.
  • The member voluntarily withdraws from MBirSA in writing.

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