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 programs that are focused on Awareness/Education/Training; Diagnosis & Newborn screening; Data/registry; Care & Treatment and Research for 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.
In order to help alleviate the burden of genetic and rare diseases in Ghana, the Undiagnosed and Rare Disease Trust Fund (URD Trust Fund) has been created to provide financial support to patients and rare disease related programs.
Use of the Fund
Awareness & Education
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.
Diagnosis & Newborn Screening
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.
Data & Registry
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.
Care & Treatment
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.
Research
Part of this fund will be used to support and enhance research on genetic and rare diseases in Ghana.