The Organization for Rare Diseases of India (ORDI) is calling for funding for rare diseases based on the Russian "Circle of Good" model.

The Organization for Rare Diseases India (ORDI) calls for funding for rare diseases based on the Russian "Circle of Good" model.

Amid Russian President Vladimir Putin's visit to India, the topic of rare diseases has gained new prominence on the Indian public agenda.

The Organization for Rare Diseases India (ORDI), a national patient organization, has submitted recommendations to the Ministry of Health and the Prime Minister's Office to establish a Rare Bharat Mission program modeled after the Russian experience.

Russian model becomes benchmark for India

ORDI co-founder and executive director Prasanna Shirol (https://orphan-cis.net/news/315/) told Business Standard (https://www.business-standard.com/industry/news/patient-bodies-seek-russia-like-funding-for-rare-dis...), that the Russian state-owned Circle of Goodness Foundation has become a key example of an effective model for financing the treatment of rare diseases in India.

ORDI emphasizes that a specialized state fund has been created in Russia, financed by an additional 2% income tax for wealthy citizens. These funds are used to ensure children have access to expensive orphan drugs, innovative therapies, and high-tech medical equipment.

According to the foundation, Circle of Kindness has already provided assistance to more than 22,500 patients—this figure is cited by ORDI as proof of the effectiveness of its specialized funding mechanism.

ORDI Proposal: Rare Bharat Mission

The patient organization proposes:

• establish a national rare disease fund;

• allocate a starting budget of approximately ₹2,000 crore;

• further replenish the fund through government mechanisms and corporate social responsibility (CSR);

• direct funds toward the treatment of costly orphan diseases and the purchase of equipment.

Shirol noted that the current National Policy on Rare Diseases (NPRD), which provides a one-time payment of ₹50 lakh, does not cover the actual costs, especially for chronic diseases requiring long-term care.

Court ruling highlights need for reforms

Earlier, the Delhi High Court ordered the government to establish a permanent National Foundation for Rare Diseases (NFRD) to ensure continuous treatment rather than one-time payments.

In this regard, ORDI believes that the Rare Bharat Mission, based on the Russian model, could provide a sustainable systemic solution.

 International Interest in Russian Experience

We remind you that Prasanna Shirol (https://t.me/occ_cis/156) visited Moscow in June of this year and participated in the CIS Orphan Forum, where he learned in detail about the work of the Circle of Kindness Foundation. Following this, ORDI included the Russian model in the list of international solutions that could be adapted for India.

Source link: Business Standard (https://www.business-standard.com/industry/news/patient-bodies-seek-russia-like-funding-for-rare-dis...)