By: Henrietta Avollah Afful
The Ministry of Health (MOH), in collaboration with the Rare Disease Ghana Initiative (RDGI), has launched the 18th International Rare Disease Day with the aim of raising awareness, educating the public, and advocating for multi-stakeholder action to address rare diseases in Ghana.
Globally, rare diseases affect over 300 million people, including many Ghanaians. These diseases are often genetic in origin and disproportionately impact children. The Ministry and RDGI’s efforts come at a crucial time when awareness and access to proper diagnosis and treatment for rare diseases remain limited, primarily due to resource constraints.
Alhaji Hafiz Adam, who spoke on behalf of the Chief Director of the Ministry, acknowledged the significant challenges faced by individuals living with rare diseases and affirmed the Ministry’s commitment to addressing their needs under the National Health Policy.
Despite these efforts, he noted that many individuals still face difficulties in accessing adequate care and support due to the lack of awareness and resources.
“We must ensure that every Ghanaian, regardless of their medical condition, has access to dignified healthcare,” Alhaji Hafiz Adam said, highlighting the Ministry’s pledge to provide necessary resources and care for those affected by rare diseases.
An Associate Professor at the University of Ghana Medical School and paediatrician at Korle Bu Teaching Hospital, Professor Ebenezer Vincent Badoe, pointed out that while infectious diseases are declining, genetic disorders, along with speech and language impairments, are on the rise.
He emphasized the need for increased investment in genetic healthcare infrastructure, research, and education to enhance diagnosis and treatment capabilities for these emerging health challenges.
The Executive Director of the Rare Disease Ghana Initiative, Samuel Agyei Wiafe, made a call for the government to review and strengthen existing laws and policies related to rare diseases. He also urged the development of a national rare disease registry, an expansion of social support programs, and more training for healthcare professionals to better address the needs of individuals living with rare diseases.
In addition, various stakeholders, including healthcare professionals, policymakers, and advocacy groups such as the Scoliosis Foundation Ghana, the Paediatric Society of Ghana, the Ghana Association of Persons with Albinism, and the Hemophilia Society of Ghana, were encouraged to collaborate and work towards bridging gaps in healthcare to improve the quality of life for individuals affected by rare diseases.
This partnership signals a growing commitment to tackling rare diseases in Ghana and fostering a more inclusive and supportive healthcare system for those in need.
