Director of Allied Health at the Ministry of Health, Dr. Ignatius Awinibuno, has emphasized the urgent need to prioritize the healthcare needs of individuals living with rare diseases in Ghana.
He made this call while delivering a speech on behalf of Alhaji Hafiz Adam, Chief Director at the Ministry of Health, during the commemoration of the 2025 Rare Disease Day organized by the Ministry of Health in collaboration with the Rare Disease Ghana Initiative in Accra on Friday.
Dr. Awinibuno acknowledged the significant challenges faced by persons living with rare diseases, including limited access to diagnosis, treatment, and specialized care.
He noted that despite the global impact of rare diseases—affecting over 300 million people worldwide, including many Ghanaians—there remains a general lack of awareness and resources to support affected individuals and their families.
“The Ministry of Health recognizes the plight of persons living with rare diseases and remains committed to addressing their needs under the current national health policy, which promotes equity, inclusion, and collaboration among stakeholders,” he stated.
“As a country, we must ensure that every individual receives the dignity and healthcare access they deserve, regardless of their medical condition.”
Dr. Awinibuno stressed that many rare diseases are genetic in origin, predominantly affecting children, and called for increased efforts in early detection and intervention.
He assured that the government would continue to develop strategies aimed at reducing the burden of rare diseases and integrating them into Ghana’s universal health coverage roadmap to ensure that no one is left behind.
He urged all stakeholders, including healthcare professionals, policymakers, and advocacy groups, to work together to create awareness and improve healthcare services for individuals with rare diseases in Ghana.
On his part, Executive Director, Rare Disease Ghana Initiative, Samuel Wiafe, underscored the financial and emotional toll of caring for individuals with rare diseases, calling for stronger support systems to ease the burden on affected families.
Mr. Wiafe explained some families raising children with rare diseases often struggle to balance work and caregiving responsibilities.
"With just one child living with a rare disease, you’ll be lucky to maintain your job. Otherwise, you may have to hire a caregiver, which comes with financial strain,” he explained.
He emphasized the need for policies that provide financial relief and social support for families navigating these challenges.
He also highlighted the importance of integrating rare disease care into Ghana’s universal health coverage agenda.
“If we are able to provide adequate care for individuals with rare diseases, it means we are also strengthening our healthcare system to take care of people with common conditions,” he noted.
Mr. Wiafe expressed optimism about global efforts to advance rare disease advocacy, particularly the United Nations and World Health Assembly (WHA) resolutions aimed at improving rare disease policies worldwide.
He urged the Ministry of Health to support these resolutions, stressing that Ghana is already making strides toward meeting their targets through its national health plans.
While acknowledging the significant investments required for rare disease research, diagnosis, and treatment, he encouraged continued collaboration among stakeholders.
“These diseases may be rare, and the investments may be huge, but the little steps we take can create a layer of hope,” he stated.
“Hope is not rare, and together, we can build a future where every person living with a rare disease receives the care they deserve.”
Taking his turn, Professor at the University of Ghana Medical School, Prof. Ebenezer Vincent Baidoo hinted that infectious diseases in Ghana are on the decline due to significant progress in public health interventions, but genetic disorders are becoming increasingly prominent.
Prof. Baidoo highlighted the country’s achievements in disease prevention, particularly in malaria control and immunization.
“When I was a medical student, I would see cases of measles, whooping cough, and polio in the emergency room. I even witnessed children getting paralyzed in real time,” he recounted.
“Today, medical students rarely encounter these diseases because of Ghana’s effective immunization programs.”
However, he noted that while infectious diseases are decreasing, genetic disorders and speech and language impairments are becoming more prevalent.
“We must recognize the shifting epidemiological landscape in Ghana. Genetic conditions are now making a significant contribution to disease burden,” he explained.
Citing global statistics, Prof. Baidoo pointed out that congenital abnormalities and genetic factors affect approximately 4% to 5% of the population.
He also referenced a statement from the Royal College of Physicians in the UK, which estimated that over one in five people will suffer from a genetic disease at some point in their lifetime.
“Genetic disorders should now be at the forefront of our medical discussions,” he emphasized.
“The era of infectious diseases is fading, and we are seeing a rise in genetic-linked conditions, including coronary heart disease, diabetes, and cancer. These illnesses often have genetic origins, making it crucial for Ghana to prioritize genetic research, early detection, and specialized healthcare services.”
Prof. Baidoo called for increased investment in genetic healthcare infrastructure, research, and education to better diagnose and manage these emerging health challenges.
He urged policymakers and healthcare professionals to adapt to these epidemiological changes to ensure that Ghana’s healthcare system remains responsive to evolving medical needs.
Story by: Joshua Kwabena Smith
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