Master In Current Affairs Magazine
Master In Current Affairs Magazine Published this article page no 44 Institutional framework Government plans to notify certain medical institutes as Centers of Excellence for Rare Diseases. o Constituting an interministerial Consultative Committee at National Level to coordinate and oversee activities on rare diseases. o Constituting a Rare Diseases Cell within MoHFW ICMR and DoP in the Ministry of Chemicals and Fertilizers. Funding framework Creating a corpus fund at Central and State Level for rare diseases. o It recommends crowd funding as a source to fund treatment of rare diseases and advises hospitals to report such cases on digital platforms to gather funds. Awareness generation developing materials for generating awareness in the general public patients and their families and for training of health care providers. Conclusion There is an immediate need to create awareness among general public patients and their families and doctors. Any policy on treatment of rare diseases will have to strike a balance between access to treatments and health system sustainability. In US Orphan Drugs Act provides incentives to drug manufacturers to encourage them to manufacture drugs for rare diseases and similar incentives are also provided in the UK and certain other developed countries.Similar steps can be taken in India Master In Current Affairs Magazine buy.
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