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.
Part of this fund will be used to build capacity by offering grants to cover training of health professionals in genetics and rare disease care, genomic medicine, precision medicine and precision public health. Patient groups can apply to this fund to support capacity building initiatives and awareness campaigns.
Part of this fund will covers cost of clinical and genetic evaluation for patients seeking diagnosis for an undiagnosed genetic condition or a suspected rare disease. This will include radiological and molecular investigations including genetic testing services.
Part of this fund will be used to support molecular and genetic screening of newborns for congenital and rare disorders in Ghana.
Part of this fund will be used to support initiatives that seeks to enhance and improve data which aims to maintain a National Registry for Congenital, Undiagnosed, Genetic and Rare Disorders in Ghana.
Part of this fund will be offered to patients and their families to cover cost of treatment (drug, diet, assistive devices) and other community based interventions including rehabilitation, hospice and educational needs.
Part of this fund will be used to support and enhance research on genetic and rare diseases in Ghana.