The Ghana Reference Network for Genetic and Rare Diseases is a professional network under Rare Disease Ghana Initiative that seeks to create a clear structure for knowledge sharing and care coordination among health professionals and researchers across Ghana. They are networks of expertise, healthcare providers and researchers focused on genetic and rare diseases that are organised across Ghana.
Due to the low prevalence and complexity of rare diseases, as well as to the nature of small and scattered patient populations, GRN-RD can bring real added value to rare disease patients; GRN-RD aim to provide healthcare professionals with access to expertise that they may not be able to access in their region or institution.
Since no centre of expertise exists for a specific disease in Ghana, patients can still benefit from the knowledge that their medical professionals can get from other specialists in other facilities. GRN-RD provide the structure that facilitates a healthcare provider’s ability to access such knowledge across geographical regions.
GRN-RD promote the sharing and mobility of expertise, rather than the movement of patients themselves across the country. Dissemination of knowledge through Ghana Reference Network for Rare Diseases could also help to establish shared information databases and in turn support the development of best practice protocols. This could contribute to the ‘levelling up’ of the expertise of healthcare professionals, who can benefit from the experience of their counterparts in health facilities across Ghana.
The GRN-RD is designed to advance medical care and research on genetic and rare diseases by providing support for clinical and study sites by facilitating collaboration, study enrollment and data sharing. Through the GRN-RD, physicians, scientists and their multidisciplinary teams work together with patient advocacy groups to provide high standard care and study rare diseases at sites across the country. The GRN-RD is made up of undiagnosed, genetic and rare disease clinical and research groups that work together improving the availability of rare disease information, treatment, clinical studies, and general awareness for both patients and the medical community.
(a) To help realize the potential of cooperation regarding highly specialized healthcare for patients and for healthcare systems by exploiting innovations in medical science and health technologies;
b) To contribute to the pooling of knowledge regarding disease prevention;
(c) To facilitate improvements in diagnosis and the delivery of high-quality, accessible and cost-effective healthcare for all patients with a medical condition requiring a particular concentration of expertise in medical domains where expertise is rare;
(d) To maximize the cost-effective use of resources by concentrating them where appropriate;
(e) To reinforce research, epidemiological surveillance like registries and provide training for health professionals;
(f) To facilitate mobility of expertise, virtually or physically, and to develop, share and spread information, knowledge and best practice and to foster developments of the diagnosis and treatment of rare diseases, within and outside the networks;
(g) To encourage the development of quality and safety benchmarks and to help develop and spread best practice within and outside the network.