Patients with rare diseases sometimes live a life of isolation.

The Namibia Alliance for Rare Diseases (NARD) therefore calls for an urgent need to raise awareness and advocacy in communities about these conditions.

NARD was established by the Multiple Sclerosis Association of Namibia, the Cancer Association of Namibia, and the Okanti Foundation after patients with rare diseases reached out to them for help.

The feeling of isolation while experiencing trauma is one thing that patients with rare diseases are finding difficult not only to deal with but also to heal from.

Rare diseases are those that are often diagnosed and difficult to treat.

These include multiple sclerosis, lupus, Wiskott-Aldrich syndrome, Endometriosis, rare cancer diseases, Brown-Sequard syndrome, and Urticaria Pigmentosa.

However, there is currently no database for rare diseases in the country due to the expensive nature of diagnosis and a lack of reliable sources in terms of epidemiological studies.

Bianca Özcan of Multiple Sclerosis Namibia hints, though, that there are about 10,000 such cases in the SADC region.

"There is a huge need, there is a gap, and people are really suffering out there, and we can't really do much if we don't have a register or know who these patients are, how to treat them, and what to do for them. We are just starting; we have no funding at all to see what the numbers are."

Lack of information and delayed or misdiagnosed diseases often compromise the quality of life. However, the alliance of rare diseases offers a glimpse of hope and a sense of belonging to the patients.

The Namibian Alliance for Rare Diseases was established in 2020.

Photo Credits
Cancer Association of Namibia


Celma Ndhikwa