Raising awareness of rare diseases critical

Multiple Sclerosis Namibia founder Bianca Özcan says awareness remains a crucial step for the Namibia Alliance for Rare Diseases.
In an interview with The Namibian yesterday, Özcan said: “No single definition of rare disease prevalence exists and the criteria range from 1 to 2 000, according to the European Union. However, awareness remains crucial and that’s what we are trying to do first, to have rare diseases patients’ voices be heard,” she said.

Özcan said the Namibia Alliance for Rare Diseases (Nard) aims to act as an umbrella body that supports groups with rare diseases with education and guidance, while making the necessary arrangements with bigger organisations.

“Our aim is supporting all other smaller groups of rare diseases with advocacy and education, equity and guidelines to assist patients, while we make the right connections with larger and international rare diseases organisations who in turn support, us with the latest research options and medical advancements on the horizon going forward,” she said.

According to the alliances database, Özcan said, in Namibia the most common rare disease to date is multiple sclerosis, with 54 patients, myasthenia gravis with 15 patients, cystic fibrosis with 10 patients and lupus with 14 patients

Other rare diseases include primary ciliary dyskinesia, endometriosis, Brown-Séquard syndrome, urticaria pigmentosa, Ehlers Danlos Syndrome, chronic inflammatory demyelinating polyneuropathy and wiscott aldrich syndrome.

“Through enhanced care, support, awareness and advocacy, the rare disease community can be uplifted and empowered,” Özcan said

In a media release on Monday, Nard called on Namibians who have been affected by rare diseases. Nard believes joining forces and working collectively, can significantly improve the health options available to individuals affected by rare diseases in Namibia.

Cancer Association of Namibia chief executive Rolf Hansen said connecting to Nard will benefit the rare disease community and called on Namibians to reach out to Nard.

“Whether as an individual, a group or an organisation, connecting with Nard is an opportunity to share insights, exchange ideas and collaborate on initiatives that will benefit the rare disease community in Namibia,” Hansen said.

Nard was established in 2020 by the Cancer Association of Namibia, Multiple Sclerosis Namibia and Okanti Foundation.

The alliance aims to address the challenges faced by smaller patient organisations of rare diseases, enhance care, support, awareness and advocacy, and improve the health options available to individuals affected by rare diseases in Namibia.