Govt Launches Crowdfunding Website for Rare Disease Patients

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Though the country has quite a few online portals for crowdfunding the treatment of patients with disabilities or diseases like Ketto, Milaap and GiveIndia among others, it is for first time that the government of India has also launched a digital portal for crowdfunding patients with medical emergencies as the Department of Health and Family Welfare has launched a Digital Portal for Crowdfunding & Voluntary Donations for the treatment of patients of Rare Diseases in accordance with the mandate of the National Policy for Rare Diseases 2021. 

The Minister of State (Health and Family Welfare), Dr Bharti Pravin Pawar informed about this first of a kind initiative by government, in a written reply in the Rajya Sabha today. The digital portal is designed, developed and hosted by Centre for Health Informatics (CHI) of the National Health Portal (NHP).

“In view of the high cost of treatment, resource constraints and competing health priorities, it is difficult for the Government to fully finance rare disease treatments. To fill this gap this digital platform for individual, corporate and other donors has been created by the Government for facilitating voluntary donations for the treatment of patients with rare disease”,  said the website homepage.

To make a donation one has to register if making a donation for the first time. However, having registered once, a person may login with his/her set of credentials and can donate. 

There are about 7000 known rare diseases, affecting around 8% of the world’s population. 75% of rare disease patients happen to be children, mentions the crowdfunding portal.

The Department of Pharmaceuticals has initiated the implementation of Production Linked Incentive Scheme for Pharmaceuticals. The Scheme provides for financial incentives to manufacturers selected under the scheme for domestic manufacturing of various product categories, which also include Orphan drugs. The guidelines for the Scheme are available on the website of the Department of Pharmaceuticals under the tab ‘Schemes’.

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