fbpx

ABOUT US

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.  

MISSION

To improve the wellbeing and quality of life of families affected by undiagnosed and 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.

OBJECTIVES

  1. To educate and create awareness on rare diseases through workshops, symposiums, conferences, public lectures and community outreach programs.

  2. To advocate for equal access to healthcare and social services for people affected by rare diseases in Ghana.

  3.  To promote and advance research on rare diseases in Ghana.

  4. To coordinate care and support for patients and families with rare diseases.

VALUES

RESPECT & DIGNITY 

EQUITY 

PATIENT CENTRICITY

ACCEPTANCE & INCLUSION

EMPOWERMENT &  ENGAGEMENT

Our Team

Samuel Agyei Wiafe

Founder/ Executive Director

Board of Directors

Joe

Joseph Abenney-Yeboah

Board Chairman

Naa

Florence Naa Oyoo Quartey

Board Member

Florence

Florence Ziniel

Board Member

Gloria

Gloria Otchere

Board Member

Francisca

Francisca Enu-Kwasi

Board Member

IMG_2731

Esther Akyeampong

Board Member

MEDICAL AND SCIENTIFIC ADVISORY BOARD

Prof. Ebenezer Badoe

 

Pediatric Neurologist

University of Ghana Medical School

52608907_346695842603086_4514505992444051456_n

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.

dr.ameyaw-e1437974718815

Dr. Emmanuel K. Ameyaw

Pediatric Endocrinologist

KNUST Medical School

16265350_1409496899089636_3585159327853562665_n

Dr. Abena Tannor

Rehabilitation Specialist

Department of Family Medicine, Komfo Anokye Teaching Hospital

IMG_4019

Mrs. Charlotte Esi Myers

Clinical Psychologist

Lekma Hospital

IMG-20190607-WA0001

Dr. Seth A. Wiafe

Public Health Specialist

Loma Linda University

emilyksheldon

Emily Sheldon

Co-founder & CEO

African Health Innovation Center

59997d761055b.image

Lydia Seiders

Maryland State Ambassador for Rare Diseases

Rare Action Network (NORD) 

Sean Gordon 

Founder & Chief Volunteer Officer, RareFundingTeam

Elenora Passeri

Communications Manager, EJPRD and IRDiRC

Tanya Collins

CEO, International Gaucher Alliance

Dr. Anita Ghansah 

Medical Geneticist, Noguchi Medical and Research Institute