Patna: A series of workshops aimed at improving awareness and diagnosis of rare diseases has been held across eastern India, bringing together clinicians, students and health experts to address gaps in treatment and support systems.
The sessions, organised by the All India Institute of Medical Sciences Patna in collaboration with the Rare Diseases India Foundation, took place in Katihar on March 14 and at the Rajendra Institute of Medical Sciences on March 21.
Doctors, faculty members and medical students attended in large numbers, reflecting growing concern within the medical community over the challenges posed by rare diseases, which often go undiagnosed or are detected late.
Specialists from AIIMS Patna led discussions on identifying and managing such conditions, while also highlighting the need for more effective implementation of India’s National Policy for Rare Diseases 2021. The policy, introduced to support patients with rare conditions, remains unevenly applied, experts said.
Faculty from RIMS Ranchi focused on the difficulties of diagnosing rare diseases, particularly among newborns and children, where symptoms can be easily overlooked. They called for stronger institutional collaboration and improvements in medical training to build diagnostic capacity.
Speakers also emphasised the importance of a multidisciplinary approach, involving clinicians, researchers and support networks, to ensure timely intervention and better outcomes for patients.
From a patient advocacy perspective, representatives from RDIF highlighted the financial burden faced by families, urging greater use of crowdfunding, corporate social responsibility initiatives and other funding mechanisms to improve access to treatment.
The workshops underscored the need for sustained awareness efforts and closer cooperation between institutions, as India continues to grapple with the complex challenge of diagnosing and managing rare diseases.
