Rare Disease Ghana Initiative, the national alliance for persons with rare diseases, has called for the comprehensive screening of babies for genetic diseases.
According to the group, new born screening for early identification of rare genetic, hormone-related, endocrine and metabolic conditions is important for timely intervention to eliminate or reduce associated mortality, morbidity and disability in infants.
In 2010, the national program of newborn screening was introduced by the Ministry of Health for selected diseases as a complement to the newborn screening program for sickle cell introduced in 1993, however the programme was not sustainable due to inadequate funding.
Advocacy and Engagement Officer, Rare Disease Ghana Initiative, Esmeralda Arvo-Quardoo, in a statement said the education and efforts put in raising awareness for sickle cell diseases have not been channeled to other genetic conditions that are equally life threatening and disabling although other rare conditions can benefit from the program.
She indicated that as part of advocacy efforts to increase newborn screening in the country, the Rare Disease Ghana Initiative with the support of Roche Pharmaceuticals will undertake its second newborn screening awareness campaign this month.
The campaign, will among other things advocate for policy makers, health workers and the public to support the call to expand and make compulsory the screening of babies in the healthcare system to the benefit of the citizenry.
“Newborn screening can reduce the country’s overall disease burden, increase life expectancy and initiate procedures into adequately managing rare conditions,” she stressed.
In observing the newborn screening awareness month, Rare Disease Ghana Initiative will also organize an online campaign throughout the month of September and a webinar on September 24, 2021 as part of its recognizing rare series on the theme “Screening Babies: The pathway to Reducing Infant Mortalities and Disabilities”.
The webinar targets clinicians, caregivers, medical laboratories experts, researchers and policy makers to influence the newborn and baby screening policy to fruition with adequate and sustainable resourcing.
By Jamila Akweley Okertchiri