panelist @ AOCN organised discussion on Rare Diseases
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I was a Panelist in a Panel Discussion arranged by AOCN ( Association for Child Neurology) arranged by Dr Shefali Gulati – AIIMS New Delhi..
Read MoreI was a Panelist in a Panel Discussion arranged by AOCN ( Association for Child Neurology) arranged by Dr Shefali Gulati – AIIMS New Delhi..
Read MoreSpeaking Opportunity at ISCR ( Indian Council for Clinical Research) brings lot of Hopes. Helps to get the latest in Clinical; trial, Technology, trends and what is in store for Rare Diseases...
Read MoreThe Union Budget presented by Finance Minister Nirmala Nirmala Sitharaman on February 1 included a declaration to launch a project to eliminate sickle cell anaemia from the country by 2047. “A mission to eliminate sickle cell anaemia by 2047 will..
Read MoreThe 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..
Read MoreParticipated 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...
Read MoreAt a Foundation stone laying program for “Research and Training Unit for Rare Diseases” in CHG (Center for Human Genetics on 25th Nov 2022. I handed over the request for funds for treatment of Rare disease on behalf of Karnataka..
Read MoreI 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 MoreToday was happy to receive a confirmatory letter for Govt of Karnataka on implementation of NPRD 2021 in the state. This is the first state to implement in the country. Earlier Karnataka was the first state in the country to..
Read MoreDuring Inauguration of SMA clinic at Baptist Hospital Bengaluru..
Read MoreRead 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..
Read MoreAugust 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..
Read MoreAugust 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..
Read MoreBangalore 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..
Read MoreAugust 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..
Read MoreWe 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..
Read MoreAbstract 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..
Read MorePrasanna Shirol currently serves as the Co-founder & Executive Director of ORDI (Organization for Rare Diseases India), an Umbrella organization that represents 7000+ diseases in India. He has been instrumental in national-level advocacy for Rare Disorders for the past 11..
Read MoreOf 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..
Read MoreSince 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..
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