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Dr. Shivkumar Sarin addressing the program.

New Delhi-based Institute of Liver and Biliary Sciences (ILBS) on Saturday organized a Wilson disease patient advocacy program as part of the two-day international conference 'Wilson India 2026' supported by the Asia Pacific Association for the Study of the Liver (APASL). The event brought together patients, families, physicians and international experts with the common goal of strengthening the collective voice of the Wilson disease community in India.

Wilson's disease is a genetic copper overload disorder that can lead to liver cirrhosis and neurological problems, and affects about 1 in 30,000 children and young adults.

About 85 experts from all over the world included

As a liver-focused university and referral center for complex liver diseases, ILBS manages approximately 25-30 new Wilson's disease cases each year. Pro. The conference, organized by the Department of Pediatric Hepatology under the leadership of Seema Alam, brought together around 85 experts and 110 delegates from across the world who deliberated on this rare but debilitating disease in children and adults.

The major part of the meeting was the Patient Advocacy Programme, which was chaired and inaugurated by Professor Vinod K, Member, NITI Aayog. Paul did. He stressed the need for rare disease advocacy, timely diagnosis and equitable, affordable lifelong treatment for Indian patients suffering from Wilson's disease.

Medicines imported into India from abroad

He said that the extremely expensive medicine required by these patients, Triantane, is now available in India at one hundredth of the cost of the medicine imported from abroad, due to the efforts of the Government of India and the Pharma Industries of India. Let us tell you that the main objective of the Patient Advocacy Program is to empower patients to better understand health services, take informed decisions about treatment options and overcome financial/legal barriers.

ILBS Director Professor Shiv Kumar Sarin described this initiative of the Government of India as a big boon for the patients suffering from Wilson's disease. He emphasized on developing accurate, tools for early detection and management of Wilson's disease, especially in areas with limited resources.

Attention towards social and economic challenges

Claire Stapleton, a nurse from the United Kingdom and co-founding member of the Wilson Disease Global Alliance (WDGA), called for empowering patients and their families to share their experiences in a safe and inclusive environment. He outlined the principles and importance of organized patient advocacy and drew attention to the clinical, social and economic challenges faced by Indian families, helping to define key advocacy priorities for the country.

impact on everyday life

International experts Dr. Michael Shilsky (Yale School of Medicine) and Dr. Aftab Ala (King's College London) participated in a session in which they answered a number of questions for parents and caregivers regarding diagnosis, long-term treatment and prognosis. A highlight of the event were the poignant testimonies of young patients and their families, who shared their diagnosis journey, difficulties in adhering to treatment and the impact of Wilson's disease on education, employment and everyday life, powerfully highlighting the urgent need for continued support, awareness and action at the policy level.