Most patients and families living with undiagnosed, genetic and rare diseases in most developing countries like Ghana find it extremely challenging to access care. This is partly due to the limited financial resources needed to improve access to care. As a result, Rare Disease Ghana Initiative has established the Undiagnosed and Rare Disease Trust Fund (URD Trust Fund) as a special purpose funding scheme to support undiagnosed, genetic and rare disease care and research in Ghana. Our goal is to raise fund to support patient and programs that are focused on Awareness/Education/Training; Diagnosis & Screening; Data/registry; Care management & Treatment and Research for undiagnosed, genetic and rare diseases in Ghana.
It is good to know that generally, Rare diseases reflect a group of conditions with low prevalence, often appear at birth and can cause functional or structural abnormalities. They may also be detected later in one’s life, are mostly life-threatening, result in long-term disability and negatively affect individuals, families, healthcare systems and society. Mostly, affected patients are left uncared for as the area of rare diseases remains neglected in Ghana’s health care system. Currently, diagnostic services and treatment or management of these diseases is highly rudimentary and unsatisfactory.