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Sunday, September 28, 2025
TopicRare diseases

Topic: Rare diseases

Kerala set to expand unique model of procuring expensive life-saving drugs for rare diseases

The state’s KARE programme to provide free high-cost treatment for certain rare diseases for children will now cover all patients under the age of 18.

36 drugs to treat cancer, rare diseases exempted from basic customs duty in Union Budget 2025

Lakhs of patients are likely to benefit from this move as some of these drugs were exorbitant to procure.

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.

On Camera

We can’t just blame Muslims and Englishmen for shattered Hindu unity: RSS chief Deoras

In May 1974, RSS chief Madhukar Dattatraya Deoras spoke at a lecture series in Pune about caste-based discrimination and social equality within the Hindu fold.

Market regulator SEBI clears Adani Group of impropriety alleged by Hindenburg Research

SEBI probe concluded that purported loans and fund transfers were paid back in full and did not amount to deceptive market practices or unreported related party transactions.

With MiG-21’s exit, India’s squadron strength hits 6-decade low. What are IAF’s plans for the Tejas

While the IAF remains committed to the Tejas programme and has placed orders for 180 Tejas Mk1A, the force is eagerly waiting for the Tejas Mk 2 version.

Something’s hidden in the Oval Office photo of Trump, Munir, Sharif. India must look closely

What Munir has achieved with Trump is a return to normal, ironing out the post-Abbottabad crease. The White House picture gives us insight into how Pakistan survives, occasionally thrives and thinks.