The Subject Expert Committee (SEC) that advises the drug regulator of the country has recommended waiver of local phase III and IV clinical trials in India for Sanofi Healthcare India’s orphan drug to treat the Pompe disease. The Committee recommended..

Participated as a Panelist in IQVIA Kickoff Panel Discussion held at Dubai on 26 Th Jan 2023 Discussion was on Patients First – Collaborating with patients for accelerated Healthcare and Impact on communities...

I was speaker at IEM day in Mysore on 20th Nov 2022. This was organized jointly by MERD India Foundation, ORDI, IAP, JSS Academy of HigherEducation and Research, IEM Support Charitable Support Trust. Thanks to Dr Deepa Bhat who manged..

Read more at: https://bangaloremirror.indiatimes.com/bangalore/others/spreading-hope-about-spinal-muscular-atrophy/articleshow/93863456.cms?utm_source=contentofinterest&utm_medium=text&utm_campaign=cppst..

August 29, 2022: The world over, August is commemorated as Spinal Muscular Atrophy (SMA) awareness month. SMA, a progressive disease that robs affected people of their ability to walk, breathe and swallow is the leading cause of inherited death in babies. It has an incidence of around 1 in 6000. Rare diseases like SMA are difficult to handle and live with. The..

August 29, 2022: The world over, August is commemorated as Spinal Muscular Atrophy (SMA) awareness month. SMA, a progressive disease that robs affected people of their ability to walk, breathe and swallow is the leading cause of inherited death in babies. It has an incidence of around 1 in 6000. Rare diseases like SMA are difficult to handle and live with. The..

Bangalore Baptist Hospital teams up with Organization for Rare Disease India (ORDI) to fight spinal muscular atrophy. Globally the month of August is commemorated as spinal muscular atrophy awareness month. SMA, a progressive disease that robs a?ected people of their..

August is commemorated as Spinal Muscular Atrophy (SMA) awareness month. SMA, a progressive disease that robs affected people of their ability to walk, breathe and swallow is the leading cause of inherited death in babies. It has an incidence of around 1 in 6000. Rare diseases like SMA are difficult to handle and live with. The advent of revolutionary newer therapies has..

We Care For SMA: Fighting Spinal Muscular Atrophy Organised At Bangalore Baptist Hospital The world over, August is commemorated as Spinal Muscular Atrophy (SMA) awareness month. SMA, a progressive disease that robs a?ected people of their ability to walk, breathe..

Abstract Rare diseases are those diseases that are not seen frequently in a population. There are about 7000 rare diseases that have been identified worldwide, and 80% of them are caused by genetic changes. Since a small number of individuals..

Of all cases of rare diseases across the globe, around one-third occur in India. Yet, these diseases—‘rare’ because they affect a relatively small number of people—are hardly given attention in the country. With its resource constraints, India continues to lag..

Since the diagnosis, on an average, the parents have been spending close to ₹50,000 every month and Palaash has now been advised to undergo surgery that will cost close to ₹20 lakh. Four-year old Palaash was detected with a rare genetic abnormality..

..

The total amount of donations channelled to the rare diseases portal is Rs 1.18 lakh till date, Bharti Pravin Pawar, minister of state for health and family welfare, told the Lok Sabha on March 25 A government initiative to crowdfund..

In places like Saharanpur and Buldhana, a rare genetic disease has been taking away control of bodies, lives and livelihoods from entire neighbourhoods. Against all odds, a few scientists and doctors are determined to ease the pain. When I met..