Foundation Intensifies Campaign For Rare Disease Awareness

The Foundation for Neuromuscular Support Nigeria (FNSN) has launched a nationwide awareness campaign, with Kaduna State being the stronghold for its advocacy.

The campaign which focuses on rare neuromuscular disorders such as muscular dystrophy, seeks to educate the public, engage stakeholders in the health sector, and push for policy reforms that will enhance care and support for patients and their families.

The director of the foundation, Oyindamola Adeniyi, during the campaign yesterday, said rare diseases, though affecting small populations, often lead to severe disability or death when misunderstood or mismanaged.

“Many Nigerians still associate symptoms of muscular dystrophy with spiritual attacks or ‘juju’, which is why community education is so critical,” she said.

She added that their aim is a Nigeria where people living with rare diseases are seen, supported and included.

The director said the foundation’s flagship project, Massive Awareness for Rare Diseases in Nigeria (MARD NIGERIA), is currently being implemented across five states including Kaduna, Abia, Kwara, Delta and Osun.

According to Adeniyi, nearly 100 residents have been directly sensitised in Kaduna through outreach programmes, with thousands more reached through radio and social media platforms.

She added that as part of its sustainability plan, FNSN was working to integrate rare disease education in Kaduna’s primary healthcare system, train local health workers, and maintain collaboration with state ministries and the media.