Ghana joined the global community on Saturday, February 28, 2026, to commemorate Rare Disease Day, with the Rare Disease Ghana Initiative staging a symbolic lighting event at the iconic Independence Square in Accra.
The event, held at 6:00pm under the theme “Moving Forward. Looking Ahead,” formed part of the worldwide “Chain of Lights” campaign, where landmarks across different countries are illuminated in the official Rare Disease Day colours to raise awareness about rare conditions and the people who live with them.
Founder and Executive Director of the Initiative, Samuel Agyei Wiafe, explained that the choice of Independence Square was deliberate.
According to him, the monument represents justice, equity and national pride — values that resonate deeply with the fight for improved care and inclusion for persons living with rare diseases.
“It signifies our independence as a people, and everything we are advocating for is equity, justice and for the voices of the less privileged in the health sector to be heard,” he said.
He noted that Rare Disease Day is observed globally on the last day of February a month considered symbolic because it is the rarest month in the calendar, with either 28 or 29 days.
Globally, more than 7,000 rare diseases have been identified, affecting an estimated 300 million people.
In Ghana, the Initiative estimates that about three million people may be living with one rare condition or another. So far, over 200 rare diseases have been recorded locally.
Wiafe stressed that beyond awareness, the organisation is focused on addressing stigma, financial hardship and poor coordination of care.
“For a typical person with a rare disease, you are going to see multiple specialists and visit multiple healthcare systems. The cost of diagnosis is very expensive,” he said, adding that many conditions require genetic testing which is not readily available in Ghana.
In some cases, he disclosed, the organisation has had to raise close to $10,000 to support a single family to access genetic testing abroad.
He further lamented the social challenges families face, explaining that because many rare diseases are genetic, misconceptions often lead to blame, stigma and even spiritual interpretations of the conditions.
“We are here to instill hope. We want families to come out and add their voices because if they don’t, people will continue to pretend these conditions do not exist in our healthcare system,” he urged.
Also speaking at the event, Consultant Pediatric Neurologist at the University of Ghana Medical School, Prof Ebenezer Badoe, underscored the medical complexities surrounding rare diseases, particularly among children.
He explained that a disease is classified as rare when it affects a very small fraction of the population — sometimes as low as one in tens of thousands or even one in a million births.
Because of their rarity, he said, diagnosis is often delayed or incorrect. A child may initially be treated for a common condition such as eczema, only for specialists to later discover a completely different and much rarer disorder requiring specialised management.
“If you mention malaria, everybody knows it and there is treatment readily available. But if I have a rare disease and there is a cure somewhere in the world, why should I not have access to it?” he questioned.
Prof Badoe acknowledged that while treatments for many rare diseases remain limited or non-existent, rapid advances in genetics where most rare diseases originate from mutations offer hope for future cures.
He called for systematic documentation and characterisation of rare diseases in Ghana to enable the country to join international research efforts and clinical trials.
He also emphasised the need for compassionate care and structured parent support groups, noting that advocacy is often stronger when families themselves speak collectively to policymakers.
“I cannot walk to the Ministry with a rare disease, but a parent group can,” he said, urging families to organise and demand policy attention.
The lighting of Independence Square in vibrant Rare Disease Day colours served as a powerful visual reminder that although rare diseases affect a small percentage of the population individually, collectively they represent a significant public health concern.
Organisers say they will continue to intensify advocacy, public education and stakeholder engagement to ensure that persons living with rare diseases in Ghana are not left behind in national health planning.
AM
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Source:
www.ghanaweb.com