Pediatrician at the Child Health Department of the Greater Accra Regional Hospital, Dr. Yvonne Nana Ama Brew, has called for a policy that would ensure the screening of babies for rare diseases.
She said such a policy would help in the early detection of rare diseases for early treatment and also lessen the financial burden on parents with children living with rare diseases.
“The new born screening programme is quiet cheap, but screening one child at a time for rare diseases is expensive for the family. It will be cost effective if the government is testing all babies,” she said.
Dr. Brew made the appeal on the sidelines of the Rare Disease Day Lighting event, oganised by the Rare Disease Ghana Initiative (RDGI) with sponsorship from 54gene.
Dr. Brew said about 50 per cent of babies with rare diseases die after birth with the other becoming a burden on the family due to lack of support from society or the government hence the need for awareness creation.
Board Chair of RDGI, Joseph Abenney said the lighting event, organised in partnership with Ibis Styles Hotel, forms part activities to increase awareness of the condition on February 28, each year.
He said the theme for this year’s event, “Share your Story; Share your Colors” aims to draw stakeholder’s and policymaker’s attention to the experiences of persons living with a rare disease in Ghana and to secure partnerships to improve the quality of life of persons living with a rare disease.
Coordinator of the Ghana Rare Family Network and a mother of a child with a rare disease said persons living with a rare disease (PLWRD) in Ghana are marginalized, unrecognized, stigmatized, and discriminated against.
She said having a child with the condition heavily affects families and therefore called on the government to support families in managing children with rare diseases.
“You have to live our lives to understand what we go through,” she said.
By Jamila Akweley Okertchiri