It can be a challenge to provide highly specialised treatment or care for patients who have complex conditions. This is especially true when the prevalence of such conditions is low, as is the case for rare diseases. The challenge is due to both the scarcity of expertise and to the scattering of small patient populations across Ghana, sometimes in isolated locations where expertise does not exist or cannot be accessed.

Consultations between various health professionals and centers can support and help to ensure that knowledge is shared between healthcare professionals across the country. By ensuring health professionals have the most recent and expert knowledge possible, they will be better informed to make decisions on how to adapt treatment and care pathways. This in turn contributes to improvements in clinical outcomes and the quality of life of people living with a rare disease.

It is in view of this that Rare Disease Ghana Initiative has established the Ghana Professional Network for Rare Diseases. The Ghana Professional Network for Rare Diseases (GPN-RD) is a professional group under Rare Disease Ghana Initiative that seeks to create a clear structure for knowledge sharing and care coordination among health professionals across Ghana. GPN-RD aim to provide healthcare professionals with access to expertise that they may not be able to access in their Region. GPN-RD promote the sharing and mobility of expertise, rather than the movement of patients themselves across regions and health facilities. Dissemination of knowledge through Ghana Professional Network for Rare Diseases could also help to establish shared information databases and in turn support the development of best practice protocols.

Members of the network remain primarily responsible for the organisation and delivery of their healthcare. Participation in the Ghana Professional Network for Rare Diseases is therefore voluntary. Membership of the Ghana Professional Network for Rare Diseases is opened to all health professionals, students and researchers with special interest in genetic and rare diseases.

For more information about Ghana Professional Network for Rare Diseases (GPN-RD), contact :

Director of Medical Affairs

Rare Disease Ghana Initiative

F393 Fourth Otswe St, Accra
+233 55 271 6011

[email protected]

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