Rare disease patients need support

Ngaevarue Katjangua

WINDHOEK - There is a need to create awareness and on the extent of psychological and financial support to people suffering from rare diseases.

These were the sentiments shared by many at the first Rare Disease Medical Seminar and Fundraiser that took place last week Thursday at a hotel in Windhoek.

Organized by Multiple Sclerosis Namibia (MSN), the medical seminar and fundraiser ought to support other smaller rare disease organizations in Namibia, “ultimately to do capacity building, networking, awareness and support”, said founder of MSN Bianca Özcan.

Speaking at this event, the Chief Executive Officer of the Cancer Association of Namibia, Rolf Hansen said because rare diseases patients are scattered through the country, they often face their journeys alone without financial or emotional support.

“In Namibia, we have found these patients [rare diseases patients] spread across the vastness of our land, often very isolated and a lack of understanding pertaining to their medical condition, leave them heavily marginalised. As a result, medical expertise for these rare diseases is a scarce resource,” said Hansen.

Speaking at the same event, a Windhoek based clinical psychologist Heidi Burmeister-Nel said there is very little solidarity for people suffering from rare diseases, hence they suffer from numerous mental and psychological effects.
“There is very little solidarity and support for people suffering from rare diseases while they suffer a number of psychological factors for example the disease takes away their mobility, autonomy, hopes and dreams,” said Burmeister-Nel. 

The medical seminar and fundraiser was launched to lend a hand for the newly established Namibian Alliance for Rare Diseases (NARD) which was launched early February 2019.

NARD is a collaborative initiative founded by Rolf Hansen of the Cancer Association aimed at addressing the lack of knowledge and understanding pertaining to rare diseases affecting Namibians. 
Hansen said “through the cooperation of partners, a multi-disciplinary and multi-stakeholder approach to addressing healthcare issues that have often been left in the dark, will now at least be highlighted.”

The Cancer Association CEO further said that for many rare diseases, basic knowledge such as the cause of the disease, pathophysiology, natural cause of the disease and epidemiological data is limited or not available.
“This significantly hampers the ability to both diagnose and treat these diseases. To address this challenge, public funding of fundamental research into the disease process remains necessary both at a national and global level,” said Hansen.

He further added that “as an alliance, we do not have funding, but as smaller participating organisations and a responsible corporate and pharmaceutical industry, we can combine our skills, expertise, efforts and limited resources to help patients afflicted by these rare diseases who otherwise would have no voice”.

Supporting the NARD initiative through MSN, founder of the Okanti Foundation, Michaela Tietz said, “the road is built by walking in it”, and suggested that Namibia does the same with supporting rare diseases patients.
Okanti Foundation is an organization established in 2007 and has since been offering support network in Namibia to families with a chronically ill child.