The awareness campaign and Continuing Medical Education
(CME) event titled "Rare Diseases: More Common Than You Think" was
held on November 16, 2025, at the Auditorium of Jawaharlal Nehru Medical
College (JNMC), AMU, Aligarh. Organized by the Centre of Excellence for Rare
Diseases at Maulana Azad Medical College (MAMC) in collaboration with the
Department of Pediatrics and the Department of Obstetrics & Gynaecology at
AMU, the event served as a significant platform for launching the DBT NIDAN
Kendra. The program was supported by the Ministry of Health and Family Welfare
and the Department of Biotechnology, aiming to bridge the gap in genetic
healthcare and awareness.
The scientific program featured a comprehensive series of
lectures and discussions led by distinguished experts in the field of medical
genetics. Key topics included an overview of the National Rare Disease Policy,
frameworks for suspecting genetic disorders, and clinical approaches to visible
birth defects and malformations. Specialized sessions also covered Inborn
Errors of Metabolism (IEM), newborn screening basics, and the evolving role of
transplantation in treating rare genetic disorders. The faculty included
prominent figures such as Dr. Madhulika Kabra, Dr. Seema Kapoor, and Dr. Kausik
Mandal, who provided deep insights into both the clinical and policy-driven
aspects of rare disease management.
In addition to technical medical sessions, the event
emphasized the human element of genetic diseases through a dedicated segment
called "Voices of Courage," which shared perspectives from patient
support groups. A major highlight was the panel discussion regarding the
opportunities and sustainability of NIDAN Kendras (Genetic Screening and
Testing Centers). The day concluded with the formal inauguration of the
DBT-NIDAN Kendra at JNMC, marking a milestone in local diagnostic capabilities.
The successful conclusion of the CME was marked by a note of hope for future
advancements in the care and treatment of rare diseases in India.