Sidhivinayak taimes Shimla। The Postgraduate Institute of Medical Education and Research (PGIMER), Chandigarh, recently hosted a national workshop on rare diseases under the National Policy for Rare Diseases (NPRD) in collaboration with the Ministry of Health and Family Welfare. The event brought together clinicians, researchers, and policymakers from across the country to discuss the current status, challenges, and latest advances in the diagnosis and management of rare diseases in India. The workshop aimed to enhance awareness, improve early diagnosis, and promote coordinated care and policy implementation for patients affected by rare conditions. Addressing the participants, Prof. Praveen Kumar, Head of the Department of Pediatrics and Chairperson of the NPRD Cell at PGIMER, highlighted that although each rare disease affects a small number of individuals, collectively they impact a significant population.
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He emphasized that timely diagnosis, capacity building, and policy-driven financial support have already improved patient outcomes, but much work remains to be done. The workshop featured expert lectures and panel discussions focused on clinical management, genetic counselling, and best practices in patient care. Dr. Vijay Tadia, Nodal Officer of the NPRD Cell at PGIMER, also underscored the role of various departments within the institute in supporting rare disease patients. He praised the Ministry of Health and Family Welfare for efforts to streamline treatment and called for the use of crowdfunding platforms to provide additional funding support to patients in need. He reaffirmed PGIMER’s commitment to research, training, and patient-centered approaches, stressing the importance of continued collaboration among stakeholders. The workshop concluded with a unified call to strengthen implementation of the National Policy for Rare Diseases and ensure better access to care for affected families.
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