According to a press release from the Health Ministry, the policy document has been uploaded to the ministry's website since various stakeholders have been requesting a detailed policy for the management and prevention of rare diseases for quite some time.
Since the cost of treating rare diseases is prohibitively costly, many High Courts and the Supreme Court have previously expressed concern about the country's lack of a comprehensive strategy for rare diseases.
The objective of the Policy
It will be carried out with the assistance of the National Consortium, which will be formed under the Health Research Department of the Ministry of Health as convenor. A greater emphasis on research and development, as well as local medicine production, would help to reduce the cost of treating rare diseases.
The policy calls for the establishment of a national hospital-based registry of rare diseases to ensure that sufficient data on rare diseases is available for research and development.
By primary and secondary healthcare infrastructure, as well as counseling of high-risk patients, the program would concentrate on early screening and prevention of rare diseases.
Source: Amar ujalaIt would also improve the quality of tertiary health care.
The policy would foster a crowdfunding process in which individuals and businesses will be able to donate money to the treatment through an IT website.
Why is it important to have a policy for rare diseases?
Rare disease research and development still face significant obstacles since little is understood about the disease's past. They're difficult to study because the patient population is so limited and there's so little clinical expertise.
Despite recent progress, the Health Ministry says there is still a need to develop efficient and safe treatments for rare diseases and resolve various challenges. The government has announced the National Policy for Rare Diseases 2021.
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