We continue the series of publications about our foreign speakers

In anticipation of the II CIS Orphan Forum, which will be held on June 26–27 in Moscow, we continue a series of publications about our foreign speakers — leading experts in the field of rare diseases from the CIS, BRICS and the Middle East.

India, a BRICS member with a population of over 1.4 billion people, spends about 3% of GDP on healthcare (approximately $73 per capita), while government spending is less than 40% of the total. 

• India is one of two BRICS countries that have an official national policy on rare diseases (the other country is Brazil). The National Policy for Rare Diseases (NPRD) was adopted in 2021 and aims to ensure access to diagnostics, treatment and financial support for patients.
• The policy provides for the creation of reference centers, government funding for therapy and a digital platform for attracting donations.
• A significant contribution to the development of this area is made by the Organization for Rare Diseases India (ORDI), a leading public organization in the country, actively involved in the development of the regulatory framework, educational and advocacy initiatives, as well as in supporting the families of patients.

The country will be represented at our Forum by Prasanna Kumar Shirol, co-founder and executive director of ORDI.

His journey began with a personal story: his daughter Nidhi became the first officially diagnosed patient with Pompe disease in India. Faced with a lack of systemic support, Prasanna left his corporate career and dedicated himself to advocacy for patients with rare diseases.

Under his leadership, ORDI launched the first national helpline, opened a RDCCC (Regional Patient Care Coordination Centre) in Bangalore, initiated the annual Race for 7 awareness campaign, and became an active participant in public policy development. 

Prasanna Shirol serves on the advisory boards of the World Health Organization, the Indian Council of Medical Research (ICMR), and collaborates with international pharmaceutical companies.

At the Forum, Prasanna Shirol will talk about how India, despite its huge population and limited health budget, manages to implement a national program on rare diseases. He will present the measures that have proven most effective and discuss areas of cooperation within the BRICS.

The Forum will be held online. Participants will be able to join the broadcast in real time and watch the reports, presentations and discussions.

Participation is free!

Registration for the Forum: https://orphan-cis.net/events/92/