Details of National Policy for Rare Diseases
Go to source). The National Policy for Rare Diseases (NPRD) was launched by the Ministry of Health and Family Welfare in March 2021. Since then, "a total of 1,118 patients have benefited,” Patel informed.
Basics of Rare Diseases
Rare or orphan diseases are least understood of all chronic diseases. They are more common than projected and kill more people than cancer and HIV together.
Rare or orphan diseases are least understood of all chronic diseases. They are more common than projected and kill more people than cancer and HIV together.
‘Big relief for patients with #rarediseases! Govt provides financial support of up to Rs. 50 lakhs per patient for treatment at notified Centres of Excellence (CoEs). #healthcareIndia’
“The financial support of up to Rs. 50 lakhs per patient is provided for the treatment at the notified centres of excellence (CoEs) for rare diseases,” the minister added. Based on the recommendation of the Central Technical Committee for Rare Diseases (CTCRD), presently 63 rare diseases are included under NPRD, Patel said. There are also 12 CoEs, where patients can register themselves to avail of financial assistance. The CoEs include premier Government tertiary hospitals that come with facilities for the diagnosis, prevention, and treatment of rare diseases.
Understanding Rare Diseases
There are about 7,000 known rare diseases, affecting around 8 percent of the world’s population. About 75 percent of rare disease patients happen to be children. The NPRD identifies and categorises rare diseases into 3 groups: disorders that can be controlled to one-time curative treatment; those that require long-term/lifelong treatment with a relatively lower cost of treatment; and those that need definitive treatment but challenges are to make an optimal patient selection for benefit, very high cost, and lifelong therapy.
Test Your Knowledge on Rare Diseases
Rare or orphan diseases are the least understood of all the categories of chronic diseases. gene disorders. Almost 50% of those affected are children and 30% of these children will not live beyond the age of 5. It takes nearly 7 years to diagnose a ...
Rare or orphan diseases are the least understood of all the categories of chronic diseases. gene disorders. Almost 50% of those affected are children and 30% of these children will not live beyond the age of 5. It takes nearly 7 years to diagnose a ...
Further, she informed that a National Consortium for Research and Development on Therapeutics for Rare Diseases (NCRDTRD) has also been established to streamline research activities for rare diseases.
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Free Testing and Counselling for Rare Diseases
World Rare Disease Day: Improving the accessibility of genetic testing and counseling services for rare diseases will enable early detection and prompt intervention.
World Rare Disease Day: Improving the accessibility of genetic testing and counseling services for rare diseases will enable early detection and prompt intervention.
- Details of National Policy for Rare Diseases - (https://pib.gov.in/PressReleseDetailm.aspx?PRID=2043516)
Poor Awareness of Rare Diseases in India: A Report
In India, it appears that a key obstacle to effectively combating rare diseases is lack of awareness and insufficient diagnosis.
In India, it appears that a key obstacle to effectively combating rare diseases is lack of awareness and insufficient diagnosis.
