A separate branch for rare diseases

The Department of Health in our country does not have a dedicated branch for rare diseases. This is deeply concerning, as the World Health Organization (WHO) has repeatedly pointed out that medicines and related products for rare diseases are extremely expensive, and access to them remains limited in many parts of the world. Globally, 95 per cent of rare diseases still lack effective treatments due to inadequate investment and insufficient financial incentives for drug discovery.
In Bangladesh, there is no coordinated effort by the Ministry of Health or the Directorate General of Health Services to address rare diseases. Efforts are generally confined to responses around specific conditions when they gain attention, rather than a comprehensive strategy. An exception is the National Institute of Neurosciences and Hospital, particularly its Paediatric Neurology Department, which has set a positive example by introducing weekly special clinics for children with rare diseases and hosting regular seminars.
However, much more needs to be done. Developing skilled manpower, establishing advanced laboratories for proper diagnosis and ensuring patient-centred care are essential. Additionally, civil society groups have already stepped in to collect information and provide guidance on where testing and treatment are available, both at home and abroad. Their initiatives are commendable, but institutional backing is urgently required.
The WHO emphasises the importance of a holistic, patient-focused approach. It is time our health authorities recognise this gap and establish a dedicated branch for rare diseases to ensure that patients and their families receive the care and support they deserve.

Ashikujaman Syed
Business Development Manager
Tianjin Pharmacn Medical Technology Co., Ltd.
Tianjin, China
syedashikujaman@yahoo.com