Only 4 of 12 CoEs for rare diseases utilise NPRD funds in past 3 years

Q: How long will it take to read this news story?

The story "Only 4 of 12 CoEs for rare diseases utilise NPRD funds in past 3 years" has 728 words across 18 sentences, which will take approximately 4 - 7 minutes for the average person to read.

Q: Which news outlet covered this story?

The story "Only 4 of 12 CoEs for rare diseases utilise NPRD funds in past 3 years" was covered 8 hours ago by Business Standard, a news publisher based in India.

Q: How trustworthy is 'Business Standard' news outlet?

Business Standard is a fully independent (privately-owned) news outlet established in 1975 that covers mostly business and finance news. The outlet is headquartered in India and publishes an average of 157 news stories per day. It's most recent story was published 3 hours ago.

Q: What do people currently think of this news story?

The sentiment for this story is currently Negative, indicating that people regard this as "bad news".

Q: How do I report this news for inaccuracy?

You can report an inaccurate news publication to us via our contact page. Please also include the news #ID number and the URL to this story.<ul><li>News ID: #21805964</li><li>URL: https://beamstart.com/news/only-4-of-12-coes-17221651277048</li></ul>

Business Standard Logo Business Standard 8h ago

Only 4 of 12 CoEs for rare diseases utilise NPRD funds in past 3 years - Business Standard

Quick Summary:

According to data accessed by Business Standard, only four CoEs had utilised upwards of 87 per cent of the funds allocated to them since 2021, while the fund utilisation rate for seven other centres ranged from 4 to 57 per cent between 2021-22 and 2023-24.

CoEs are institutions identified by the central government to actively manage patients suffering from rare diseases.

Similarly, a Hyderabad-based parent of an eight-year-old Pompe disease patient said that while his child is eligible for Enzyme Replacement Therapy (ERT) with the available Rs 50 lakh funding, he still has to run from pillar to post to get it.“My child could be saved if he gets regular ERT sessions, but still I do not see any urgency shown by the hospital despite available funds.