Activities of Rare Disease Ghana Initiative are targeted efforts to promote awareness of rare diseases; develop, seek wide endorsement and advocate for the implementation of a plan to support education, research, service development and increase support for affected individuals and their families. We provide a platform for addressing the gaps in the entire continuum of rare disease management from increased knowledge and awareness to early diagnosis and prevention to the best to best practice treatment and care to community engagement to access to best treatments and comprehensive research.
Awareness/ Education/ Training
RDGI works to increase knowledge on rare diseases in Ghana. We engage in several activities that increase the awareness of rare diseases among professionals, policy makers, families and the general public.
RDGI seeks to be the voice of people living with rare diseases in Ghana. We ensure that the rights and privileges of the people affected by rare diseases are protected and patients have access to basic services need to improve their wellbeing and quality of life. We advocate for the implementation of policies targeted to better the life of rare disease families.
We mobilize and coordinate resources to facilitate early access to diagnosis of genetic and rare diseases.
We assist patients to have access to the available therapies and technologies.
Community Engagement, Empowerment & Care Coordination
RDGI connects rare disease families together to build a sense of community. RDGI connects families to the available care, support services and resources.
RDGI seeks to promote and engage in innovative research on rare diseases that leads to novel interventions. We seek to increase professional and academic interest in rare disease research.