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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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 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. 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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“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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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 MoreMr 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 organized by Govt of Karnataka in Feb 2016. Spoke on ORDI Initiatives in Rare Disease in India..
Read MoreORDI 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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Organized and Launched a special support group for persons with RP (Retintis Pigmentosa).Association of People with Rare Eye Diseases.ThiswasLedbyMrSubramani who is working With Deccan Herald and Smt Anadi Vishwanathan. The book “Lights OUT” written by Mr Subramni was also introduced..
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Organized a ORDI First all India PAG ( Patients Advocacy Group) Meeting at MS Ramaiah Hospital Bengaluru. Harsha Rajasimha, Dr Sudha from Center for Human Genetics, Mr Anand from DART, and others were participated . Disease gropu represented were Pompe,..
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This was a Photo taken in Train during Travel from Jaipur to Jodhpur. We were traveling to attend CME program organised by Mr Vikas Bhatia of MERD India. Mr Piyush parent also travelled along with us. I spoke on Role..
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Asia-Pacific Alliance of Rare Disease Organizations ( APARDO) Launch in Singapore 2015. Under the leadership of Mrs Durhane Wong-Rieger,President & CEO-Canadian Organization for Rare Disorders. This is the first Board Meeting. Mr Bill Claxton, Dr Ratnadevi from IAPG and others..
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Asia-Pacific Alliance of Rare Disease Organizations ( APARDO) Launch in Singapore 2015. Under the leadership of Mrs Durhane Wong-Rieger,President & CEO-Canadian Organization for Rare Disorders..
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Conducted first Rare Disease Camp in Hatti Gold Mine- Raichur..
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