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.
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.
Rare Diseases Ghana Initiative works in partnership with government, 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.
To improve the wellbeing and quality of life of families affected by undiagnosed and 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.
To educate and create awareness on rare diseases through workshops, symposiums, conferences, public lectures and community outreach programs.
To advocate for equal access to healthcare and social services for people affected by rare diseases in Ghana.
To promote and advance research on rare diseases in Ghana.
To coordinate care and support for patients and families with rare diseases.
RESPECT & DIGNITY
ACCEPTANCE & INCLUSION
EMPOWERMENT & ENGAGEMENT
Samuel Agyei Wiafe
Founder/ Executive Director
Board of Directors
Florence Naa Oyoo Quartey
MEDICAL AND 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
Rare Action Network (NORD)
Founder & Chief Volunteer Officer, RareFundingTeam
Communications Manager, EJPRD and IRDiRC
CEO, International Gaucher Alliance
Dr. Anita Ghansah
Medical Geneticist, Noguchi Medical and Research Institute