Long Wait for Rare Disorder Patients
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Long Wait for Rare Disorder Patients IIJNM Bangalore Published on 5 Sep 2017..
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Category Archives: Activities
Interview in ETHealthWorld
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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...
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First exclusive Day care center for Rare DIsease in India
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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...
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ORDI Race for 7 -2017- Press Meet coverage
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Race for 7 Media Release- My Quote “Rare diseases are not really as rare as we think there are. It is estimated that there are 70 million rare disease patients in India and one out of every twenty Indians suffer..
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Met high school classmate Mr Rajesh Mattigatti – Engineering Specialist for medical devises.
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After 28 years met my High school classmate Mr Rajesh Mattigatti. Who is a engineer and specialized in engineering the medical devises and products. Most of families with rare diseases have medical devises which are costly and many times imported..
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IGICH Approval to establish India’s 1st COEMRD – Day Care Ward
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Today was one oof the happiest day in my life. After year long discussion the proposal to set up COEMRD ( Center of Excellence for Management of Rare Diseases. was approved by steering committee of IGICH ( Indira Gandhi Institute..
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CME on Pompe in NIMHANS in Bengaluru
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CME on Pompe in NIMHANS in Bengaluru was conducted. This was attended by Dr Meenakshi Bhat, Dr Asha Benakappa- Director IGICH and Other Doctors from bengaluru..
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Precision medicine can offer HOPE to Rare Disease Patients- Bio Voice News
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Precision medicine can offer HOPE to Rare Disease Patients. The Rare Diseases have not received the attentionthey deservedwithin the health Policy Initiatives in India , feels Prasanna Kumar B Shirol.v- Bio Voice News -Aug 2016 Download PDF for full..
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Rare Disease patients make a fervent appeal to Govt
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“Dignosis and treatment of rare disease like MPS is challange. Today, many kids are suffering without treatment and many may not have even been diagnosed. We have been requesting the state government to form a policy” -Prasanna Shirol- Co founder..
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ORDI Race for 7- 2016 Press Meet coverage by Kasturi News
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ORDI Race for 7- 2016 Press Meet coverage by Kasturi News..
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World Through My eyes- A Photographic Journal
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World Through my eyes – A photographic Journal prepared by Rainbow Across Border-Singapore was displayed during Race for 7 in Bengaluru. Ms Dhanya Ravi- rare disease warrior with OI ( Osteo Genesis Imperfecta was featured from India...
Read MoreMERD India and ORDI conducted Rare Disease Day for the first time in Jaipur
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Mr Vikas Bhatia from MERD India and ORDI conducted Rare Disease Day for the first time in Jaipur. Mr Samir Sethi and Harsh Malhotra from Rett syndrome participated from PAG. Many doctors, Patients and families participated...
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Speaking at Bangalore India Bio in 2016
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Speaking at Bangalore India Bio organized by Govt of Karnataka in Feb 2016. Spoke on ORDI Initiatives in Rare Disease in India..
Read More17th National Conference of IAP Intensive Care Chapter and 1st International Conference on Pediatric Rare Diseases
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ORDI was part of ” 17th National Conference of IAP Intensive Care Chapter and 1st International Conference on Pediatric Rare Diseases” in jaipur. My self and Ms Sangeeta Barde- Co founder attended the conference...
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