Samuel Agyei Wiafe is a Clinical Psychologist who saw the need to advocate for people living with rare diseases in Ghana after he came across a family affected by an undiagnosed syndrome. After realising the impact of undiagnosed and rare diseases on the family and the challenges within the healthcare system, he established the Rare Disease Ghana Initiative in 2017 to champion advocacy and support for families affected.
“Rare diseases which are mostly chronic, life-threatening, and debilitating illnesses; have huge economic, social and mental health impact as they are mostly neglected due to their low prevalence. Lack of awareness, limited resources coupled with socio-cultural beliefs worsen the burden of living with a rare and genetic condition in Ghana and Africa,” says Samuel.
Rare Disease Ghana Initiative (RDGI) is a registered national Non-Governmental Organisation in Ghana made up of a network of professionals, patients, caregivers and organisations whose aim is to develop, seek wide endorsement and to advocate for the implementation of a plan to support research, education, service development and seek support for individuals and families affected by undiagnosed, genetic and rare diseases in Ghana. RDGI brings together rare disease patient support groups, charitable and non-profit organizations, health organizations, clinical experts, researchers, emerging biotech enterprises, and industry partners to take action on rare disease in Ghana and in collaboration with international alliances.
RDGI also works in partnership with government, government agencies, industries, individuals and other non-governmental organizations to take action on rare diseases.
Prior to founding RDGI, Samuel volunteered for close to six years with Breast Care International — a nonprofit interested in community awareness, screening programs and research for breast cancer in Ghana where he supported the organization in data and research-related activities.Tags: Ghana, rare diseases