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About Us

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Our Approach

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.

Our Story

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.

MISSION

To improve the wellbeing and quality of life of families affected by rare diseases in Ghana.

VISION

To be the leading organization for health professionals, patients, caregivers and researchers; serving as the voice and coordinating care for rare diseases in Ghana.

OUR VALUES

RESPECT & DIGNITY for Human Life 

EQUITY in access to Healthcare and Social services 

Patient Centric Healthcare 

ACCEPTANCE & INCLUSION at all levels

Patient EMPOWERMENT

Caregiver  ENGAGEMENT

Meet the Team

Founder/Executive Director

Samuel Agyei Wiafe

Founder/ Executive Director

Board of Directors

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Joseph Abenney-Yeboah

Board Chairman

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Florence Naa Oyoo Quartey

Board Member

Florence

Florence Ziniel

Board Member

Gloria

Gloria Otchere

Board Member

Francisca

Francisca Enu-Kwasi

Board Member

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Esther Akyeampong

Board Members

Medical & Scientific Advisory Board

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Prof. Ebenezer Badoe

Pediatric Neurologist

University of Ghana Medical School

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Prof. Solomon Ofori-Acquah 

Medical Geneticist

School of Biomedical and Allied Health Sciences, University of Ghana

Dr. Yaw Asare- Aboagye

Executive Director, Biometrics,

BioMarin Pharmaceutical Inc.

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Dr. Emmanuel K. Ameyaw

Pediatric Endocrinologist

KNUST Medical School

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Dr. Abena Tannor

Rehabilitation Specialist

Department of Family Medicine,

Komfo Anokye Teaching Hospital

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Mrs Charlotte Esi Myers

Clinical Psychologist

Lekma Hospital

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Dr. Seth A. Wiafe

Public Health Specialist

Loma Linda University

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Emily Sheldon

Co-founder & CEO

African Health Innovation Center

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Lydia Seiders

Maryland State Ambassador for Rare Diseases

National Organisation for Rare Diseases (NORD)

Support Us

Your donations helps us to achieve more