The Rare Disease Forum (RDF) is a sub-group of the Sri Lanka College of Paediatricians (SLCP) established in 2017 with the objective of improving awareness, diagnosis, and management of rare disorders in Sri Lanka. The founding president of the forum was Prof. Harendra de Silva, a pioneer in paediatrics and child health in the country.

Since its inception, the RDF has organized nine national Rare Disease Day events, which have played a vital role in raising public and professional awareness about rare conditions and in advocating for better care and support for affected children and their families. Through these initiatives, the forum has made a significant contribution toward enhancing the standards of care for children living with rare diseases in Sri Lanka.

The current leadership of the forum includes Prof. Ruwanthi Perera (President), Dr. Imalke Kankananarachchi (Secretary), and Dr. Vindya Subasinghe (Treasurer). Under their guidance, the RDF continues to expand its activities and partnerships with local and international stakeholders.

Although Sri Lanka does not yet have a national rare disease policy, the Rare Disease Forum of the SLCP is actively collaborating with the Ministry of Health and other relevant organizations to develop a national policy framework aimed at improving diagnosis, multidisciplinary care, and access to treatment for individuals affected by rare diseases.

Dr Vindya Subasinghe

Consultant Clinical Geneticist, Lady Ridgeway Hospital

• Professor Deepthi De Silva
• Dr Anuradha Kodippili
• Dr Manoji Gamage
• Dr Sanjaya Fernando
• Dr Majitha Ibrahim
• Dr Thushara Priyawansa
• Dr Dhanushka Dasanayaka
• Dr Shanika Vitharana