Rare Disease Ghana Initiative is a non-governmental organisation made up of network of professionals, patients and their caregivers who aims to develop, seek wide endorsement and to advocate for the implementation of a plan to support research, education, service development, promote awareness and seek support for individuals affected by rare and genetic diseases in Ghana.
Rare Diseases Ghana Initiative hopes to partner with governments, government agencies, industries, individuals and other non-governmental organizations to develop a National Policy for Rare Diseases in Ghana and to determine strategies for its implementation.
Rare Disease Ghana Initiative was started in 2017 by Mr. Samuel Agyei Wiafe - a clinical psychologist who saw the need to advocate for people affected by 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 has established Rare Disease Ghana Initiative to champion advocacy and support for families who might find themselves in similar situations. The organisation has grown to currently include multidisciplinary team of health professionals, patients and their caregivers whose vision is to be the the lead and the voice coordinating rare disease care in Ghana.
To improve the wellbeing and quality of life of families affected by rare diseases in Ghana.
To be the leading organization for health professionals, patients, caregivers and researchers; serving as the voice and coordinating care for rare diseases in Ghana.
RESPECT & DIGNITY for Human Life
EQUITY in access to Healthcare and Social services
Patient Centric Healthcare
ACCEPTANCE & INCLUSION at all levels
Meet the Team
Samuel Agyei Wiafe
Founder/ Executive Director
Board of Directors
Florence Naa Oyoo Quartey
Medical & Scientific Advisory Board
Prof. Ebenezer Badoe
University of Ghana Medical School
Prof. Solomon Ofori-Acquah
School of Biomedical and Allied Health Sciences, University of Ghana
Dr. Yaw Asare- Aboagye
Executive Director, Biometrics,
BioMarin Pharmaceutical Inc.
Dr. Emmanuel K. Ameyaw
KNUST Medical School
Dr. Abena Tannor
Department of Family Medicine,
Komfo Anokye Teaching Hospital
Mrs Charlotte Esi Myers
Dr. Seth A. Wiafe
Public Health Specialist
Loma Linda University
Co-founder & CEO
African Health Innovation Center
Maryland State Ambassador for Rare Diseases
National Organisation for Rare Diseases (NORD)
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