AGYEI WIAFE Samuel
Founder/Executive Director, Rare Disease Ghana Initiative
Samuel Agyei Wiafe is a Clinical Psychologist; Founder/Executive Director of Rare Disease Ghana Initiative. After running into a family with an undiagnosed syndrome, he immediately had clear what the impact of these diseases can be on the people affected and those close to them, as well as the incredible challenge they pose for the entire health care system. And so, in a country – such as Ghana – where it is difficult to access specialized multidisciplinary health services and access to treatment, where living with an undiagnosed and rare disease can be challenging; Samuel Wiafe established the Rare Diseases Ghana Initiative (RDGI) as
the National Non-Governmental Advocacy Organization serving as the voice and coordinating care for undiagnosed, genetic and rare diseases in Ghana. Samuel is a change maker who believes in equity and inclusion of all in all aspect of the society. He has received training in MPS Disorders, Fabry & Gaucher and other Metabolic Disorders from FYMCA Medicals LTD and serves as an Advisor on the African Taskforce for Rare Diseases. Samuel is a selective participant in the 4th International Summit in Human Genetics and Genomics held at the National Institute of Health by the National Human Genome Research Institute (NHGRI). He is a member and Co-chair of the Developing Nations Committee of the Undiagnosed Disease Network International (UDNI) and a member of the Panel of Experts from the WHO Collaborative Global Network for Rare Diseases. Samuel a member and the Vice-chair of the Patient Advocacy Constituent Committee (PACC) of the International Rare Disease Research Consortium (IRDiRC).