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Monday, November 4, 2024
TopicRare diseases

Topic: Rare diseases

New hope for rare disease patients: Rs 900-cr govt project to get high-value drugs at lower rates in works

India has 8.4 to 19 crore rare disease patients, according to health ministry estimates. But current beneficiaries in most cases are kids or those who need relatively less expensive drugs.

ICMR calls for development of local drugs for rare diseases, offers assistance in clinical research

The medical research body aims to encourage domestic companies to develop cost-effective treatments for rare conditions, such as spinal muscular atrophy, Gaucher disease, among others.

Delhi doctors perform 8-hour auto liver transplant surgery on Kyrgyzstan woman, 2nd in India

Surgery conducted at Fortis Escorts, Okhla. Removal of diseased portion of liver was a challenging task as organ was stuck around surrounding vital structures.

Govt decision to remove tax on drugs & food to treat rare diseases could benefit 70-90 million Indians

Finance ministry announces exemption from basic customs duty. Cost of some medicines used to treat rare diseases ranges from Rs 10 lakh to Rs 1 crore, says govt.

‘Breaks me every day’: At Delhi rally, parents of kids with muscular dystrophy flag dire need of govt support

Their main demands were amendment of rules to ensure insurance firms can't deny reimbursement of medical expenses & funding of indigenous research to develop a treatment protocol for DMD.

Govt sets up ‘rare disease’ crowdfunding portal, 30 patients get 26,500 donations in a week

The donations are not yet income tax exempt but the process is on for getting the relevant exemptions.

Harsh Vardhan approves national policy for rare diseases

The policy aims to lower the high cost of treatment for rare diseases, with increased focus on indigenous research and local production of medicines.

One in three children with a rare disease won’t live to see their fifth birthday

There are about 7,000 different rare diseases. And on Rare Disease Day, it's time to accept these diseases are more common than you think.

Modi govt to make one-time Rs 15 lakh payment for poor patients with rare diseases

Experts say the one-time payment for poor patients of rare diseases is a u-turn from the govt’s earlier promise of continued aid irrespective of income.

Trader’s margin on drugs for rare diseases may be cut to 30% from 4,000%

The treatment of rare diseases requires medicines categorised as ‘orphan’ drugs, which are mostly imported and cost a patient anything between Rs 50 lakh and Rs 4 crore per year.

On Camera

Trudeau is nursing snakes in his own backyard. Misguided Sikhs in Canada are losing the plot

By turning a blind eye to the snakes in his own backyard, Trudeau is setting the stage for a disaster of epic proportions for his country, his people, and the world at large.

Watch CutTheClutter: Flattening INR-USD rate, and debate on pros and cons of a ‘strong’ rupee

In Episode 1544 of CutTheClutter, Editor-in-Chief Shekhar Gupta looks at some top economists pointing to the pitfalls of ‘currency nationalism’ with data from 1991 to 2004.

India carries out 1st patrol in Depsang since disengagement with China, to take things ‘slow’

While there are patrolling points (PP) 10, 11, 12, 12A and 13 in the Depsang Plains, the patrol in the region Monday was carried out to only one point as decided by India and China.

Xi wanted to teach India about imbalance of power. We should take a budgetary lesson from it

While we talk much about our military, we don’t put our national wallet where our mouth is. Nobody is saying we should double our defence spending, but current declining trend must be reversed.