The Government Chief Medical Officer, Dr Grace Magembe, addresses MUHAS delegates during Rare disease forum recently in Dar es Salaam. PHOTO | COURTESY
Dar es Salaam. Tanzania is intensifying efforts to confront the growing burden of rare diseases, with the government urging stronger collaboration between universities, hospitals and research institutions to improve diagnosis, treatment and policy response.
Health experts say that although each rare disease affects a relatively small number of people, collectively they pose a significant public health challenge that remains largely under-recognised in many developing countries.
Globally, more than 7,000 rare diseases have been identified, affecting an estimated 300 million people worldwide, equivalent to about 3.5 to 5.9 percent of the global population. Many of these conditions are genetic, chronic and life-threatening, with about half of patients being children.
Despite this growing burden, nearly 95 percent of rare diseases still lack effective treatment, largely due to limited research investment and the complexity of diagnosing such conditions. In Tanzania, health authorities estimate that around six percent of the population could be living with at least one rare disease, translating to millions of people whose conditions often remain undiagnosed or poorly managed.
Common rare diseases reported in the country include sickle cell disease, hemophilia, autism spectrum disorder, systemic lupus erythematosus and Gaucher disease. Speaking during the Rare Diseases Scientific Conference at Muhimbili University of Health and Allied Sciences (MUHAS) in Dar es Salaam, on March 8, 2026, Chief Medical Officer, Dr Grace Maghembe, said stronger research collaboration will be critical in helping Tanzania understand the scale of the problem and design effective interventions.
“These diseases may appear rare individually, but when combined they affect a significant number of people,” she said. “Without research, we cannot generate the evidence needed to guide policy, improve diagnosis and strengthen treatment services.”
Dr Maghembe directed institutions such as MUHAS and the Muhimbili Medical Research Institute (MIMRI) to deepen collaboration in scientific research, particularly in areas such as genetic studies, early diagnosis and specialised treatment.
She also emphasised the government’s commitment to strengthening specialised healthcare services by investing in infrastructure, training and advanced medical expertise.
A key focus, she said, is encouraging universities to produce more specialised experts capable of diagnosing and treating rare diseases, an area where Tanzania currently faces a serious shortage of specialists.
“We want our universities to train more super-specialists who can handle complex and rare conditions locally instead of forcing patients to seek treatment abroad,” she noted.
Experts attending the conference said delayed diagnosis remains one of the biggest challenges facing patients with rare diseases.
Acting Vice Chancellor of MUHAS, Prof Emmanuel Balandya, said many patients spend years moving between hospitals before receiving an accurate diagnosis. “Rare diseases are complex and often mimic other common illnesses, which makes diagnosis difficult, especially where specialised testing and genetic services are limited,” he said.
Studies show, according to Prof Balandya, that most global medical data on rare diseases has been collected from populations outside Africa, leaving significant knowledge gaps about how these conditions affect African communities.
He said that improving research networks across hospitals, universities and global institutions could help build a stronger evidence base and accelerate the development of treatments. Dr Maghembe said the government is already strengthening referral systems to ensure that patients with rare diseases can be identified early and linked to specialised care.
For instance, more than 200 healthcare providers across 14 health facilities have been trained to establish hemophilia treatment units, with services expected to expand to all regional referral hospitals by the 2026/27 financial year.
“At the same time, treatment services for sickle cell disease have been expanded to nearly all regions and are now available in more than 80 percent of district hospitals nationwide,” she said.
Experts say tackling rare diseases will require a multi-sector approach, where researchers generate evidence, hospitals improve diagnosis and treatment, and communities increase awareness to encourage early health-seeking behaviour.
Civil society organisations are also playing a growing role in raising awareness and supporting patients.
Advocacy groups such as the Ali Kimara Rare Disease Foundation have been working to highlight the challenges faced by patients and to promote stronger collaboration between government, researchers and healthcare providers.
