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Rare Disease Policy Draft: Govt proposes to give Rs 15 lakh aid

Rare Disease Policy Draft highlights a fact that hospitals will be selected through crowd-funding system.

Jan 15, 2020 10:00 IST
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The Ministry of Health and Family Welfare released a policy draft on January 13, 2020, on rare diseases. The objective of this policy draft is to provide Rs. 15 lakh help to the poor people who can’t afford the expenses of treatment.

According to the reports published in various media houses, the Indian Council of Medical Research (ICMR) will be established. This council will prepare a database of beneficiaries of the Ayushman Bharat Scheme. Rare disease policy will be helpful for lakhs of poor people in the country.

Key Highlights

• The ICMR will identify people suffering from rare diseases and provide financial assistance up to Rs 15 lakh for their treatment.
• The draft highlights the fact that hospitals will be selected through crowd-funding and for the treatment of rare diseases to provide financial assistance to the victims.
• The draft proposes to set up a separate digital platform for voluntary crowd-funding.
• The draft states that the government wants to create an alternative mechanism for providing financial facilities to provide maximum health services to the people.
• A digital platform will be formed under this scheme.

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Rare Diseases

Rare diseases are life-threatening, severe and chronic illnesses. There are several rare diseases like  Lysosomal Storage Disorders (LSDs), Chronic Granulomatous Disease, immune deficiency disorders, and kidney or liver transplant. The new government scheme will provide financial aid in case of such rare diseases.

What is Crowd-Funding?

Crowd-funding is the process of raising small amounts of money for a particular cause, venture or social welfare. A web-based platform or social networking is used to generate money. A person, who looks for crowd-funding, gives complete data and information about the cause behind crowd-funding. Community crowd-funding includes a donation, awards, charity funding. This is completely legal. It is a popular method of raising funds for social welfare.

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