HAE First meeting at New Delhi
- -
I was a invited speaker at the first HAE parents meeting in India. Shmabavi from ORDI has joined the meeting...
Read More
Category Archives: Activities
Race for 7 -2019 -Coimbatore @ PSG Hospital Ground
- -
It was a memorable day for ORDI -Racefor 7 and for me to get Mr Narain Karthikeyan – First Formula One driver from India to flag off in Coimbatore in Tamilnadu. This event was conducted in PSG Hospital ground. With..
Read More
Patient Advocacy – in Current Science – Guest Editorial by Mohua Chakraborty Choudhary
- -
It took seven years for one patient to be correctly diagnosed with Pompe disease. This disease needs enzyme replacement therapy (ERT), which can cost up to Rs 1 crore per person per year. This was beyond the means of the..
Read MoreThis Father’s PIL Could Change The World For Indians Suffering From Rare Diseases
- -
This Father’s PIL Could Change The World For Indians Suffering From Rare Diseases What’s also important to note is that these rare diseases are country specific. For instance, malaria is not considered a rare disease in India, but it is..
Read More
Article about India’s First Neuro Muscular Clinic jointly ORDI & Baptist Hospital Bengaluru.
- -
Article about India’s First Neuro Muscular Clinic jointly ORDI & Baptist Hospital Bengaluru. My Quote 1) “There are 7000 Rare DIseases and Majority of the cases we have observed are Nerve and Muscle” 2) We are filing a PIL, There..
Read More
Challenges and opportunities for rare diseases in India : Prasanna Kumar B Shirol
- -
Link for article :https://health.economictimes.indiatimes.com/news/industry/challenges-and-opportunities-for-rare-diseases-in-india-prasanna-kumar-b-shirol/63664280..
Read More
I Care for Rare
- -
My heart always beats for these lovely children and I cannot rest until. I see a a day when there is no Undignosed case in India and every one get the treatment for all treatable diseases. During launch of “I..
Read More
ORDI – Racefor7-2018 coverage by Digvijaya TV during press Meet
- -
Racefor7-2018 coverage by Digvijaya TV..
Read More
ORDI Race For 7: a run that will change lives
- -
ORDI- Race For 7: a run that will change lives ..
Read More
ORDI Video by Savr Kumar
- -
This video compiled by Mr Savr Kumar ..
Read More
Karnataka Patients delegation visit to Meet Health secretory
- -
Karnataka Patients delegation visit to Meet Health secretory for treatment. ..
Read More
My Media Statement on Court order on Insurance
- -
” In Rare and Most genetic Diseases, The cost of treatment is very high, The patient has to undergo treatment through supportive care. My Media Statement on Court order on Insurance coverage for Genetic Diseases..
Read More
Mr Shahid Akhter Deputy Editor, Economic Times Online Healthcare
- -
Meeting Mr Shahid Akhter Deputy Editor, Economic Times Online Healthcare during my interview in Bengaluru..
Read More
12th Annual ICORD Conference 6th China Rare Disease Summit
- -
I was a Speaker at “12th Annual ICORD Conference 6th China Rare Disease Summit” representing ORDI and Indian Rare Disease community. This was organized by International Conference on Rare Diseases and Orphan Drug, Chinese Organization for Rare Disorders , Peking..
Read More
Long Wait for Rare Disorder Patients
- -
Long Wait for Rare Disorder Patients IIJNM Bangalore Published on 5 Sep 2017..
Read More
Interview in ETHealthWorld
- -
In an interview with ETHealthworld, Prasanna Shirol, Co- Founder and Executive Director, Organization for Rare Disease India, Bengaluru, talks about the bottlenecks that still exist even after the formation of rare disease policy...
Read More
First exclusive Day care center for Rare DIsease in India
- -
At First RDCCC Rare Disease Care co ordination center at Indira Gandhi Institue of Child Health Bengaluru First exclusive Day care center for Rare DIsease in India...
Read More
