Collaboration, inclusion and sharing of expertise amongst clinicians and scientists are of key importance in shortening the diagnostic odyssey of rare disease patients.

These core values, combined with access to the required resources and infrastructure, are central to establishing a culture in Nngwe that will serve the interests of rare disease patients.

Very often, information is not shared despite an ongoing diagnostic odyssey.

While ethics standards and the POPIA act prevents unconsented sharing of information, clinicians and scientists are also frequently reluctant to do so because of competing self-interests.

Nngwe request of participants to reprioritise in order to ensure that the interest of the patient, other patients in society and future patients and their families, take precedence over and above other interests.