DAR ES SALAAM: MUHIMBILI National Hospital (MNH) Executive Director Professor Mohamed Janabi has called for continued public education on rare diseases, stating that consciousness will help the communities to understand better the challenges associated with the conditions.
Speaking yesterday during an event to mark the World Rare Disease Day, Prof Janabi urged medical professionals to deepen their understanding of rare diseases.
He stressed that building doctors’ capacity on the conditions would enhance their ability to diagnose and treat patients more effectively.
“Strengthening the capacity of medical practitioners will enable them to understand various aspects of rare diseases, thus improving diagnosis and treatment,” he said.
Prof Janabi also highlighted the need for continued publication of research and education materials on rare diseases, saying such initiatives would provide vital knowledge to the public and healthcare professionals.
“The on-going publication of detailed information on rare diseases will help to raise awareness and ensure that affected individuals receive the necessary attention,” he explained.
Moreover, Prof Janabi called on doctors to leverage artificial intelligence (AI) in researching and managing rare diseases, stressing the importance of using technology to enhance medical knowledge and treatment options.
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On her part, Paediatrician and Endocrinologist Dr Kandi Muze from MNH urged the public to support individuals affected by rare diseases.
She pointed out the significant challenges faced by patients and their families due to lack of awareness and limited medical resources.
“The collective support of communities is crucial in creating an environment where those with rare diseases feel understood, cared for and empowered,” she noted.
One of the attendees, Mr Khamis Kaundu, whose daughter has been living with Gaucher disease since 2016, expressed gratitude to MNH doctors for their relentless efforts in managing her condition.
He acknowledged the hospital’s role in securing medication from South Africa to treat his daughter, despite the rarity of the disease.
“Gaucher disease is a condition that prevents the body from breaking down a type of fat. I sincerely thank the doctors for ensuring my daughter receives medication from South Africa.
It is a great relief and something to be proud of, given the scarcity of treatment options for such rare conditions,” Mr Kaundu said.
Rare diseases, also known as orphan diseases, affect a small percentage of the population and are often characterised by complex symptoms.
It is estimated that over 300 million people worldwide, about 6 to 8 per cent of the global population suffer from these conditions. Currently, 95 per cent of rare diseases lack approved treatments.
There are more than 6,000 known rare diseases, with over 80 per cent having a genetic origin.
Two-thirds of these conditions manifest before the age of two and one in three patients suffers from motor, sensory, or intellectual impairments. Additionally, one in five patients endures chronic pain.
Rare diseases can lead to severe disability and significantly impact the quality of life, often resulting in loss of autonomy or even death due to the absence of suitable treatments.
While genetic factors are a primary cause, some rare diseases also result from infections and environmental influences.
