“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..
Read More
ORDI Race for 7- 2016 Press Meet coverage by Kasturi News..
Read More
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...
Read More
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...
Read More
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..
Read More
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,..
Read More
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..
Read More
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..
Read More
Conducted first Rare Disease Camp in Hatti Gold Mine- Raichur..
Read More
Partipated in a Rare Disease Asia Conference 2015- Love Is Not Rare . We Presented a Poster on ORDI -RDCCC for the first time and received lot appreciation for the concept...
Read More
Partipated in a Rare Disease Asia Conference 2015- Love Is Not Rare . I was on eof the Organizing Committe Member on behalf of ORDI. I also Partipated in the panel Discussion ” Landscape of the Support Networks for Rare..
Read More
Visited along with Asia PAG to KK Women’s and Children’s Hospital Singapore. We learned and understood the best practico of Childcare, ERT infusion, Day care facilities for Rare Disease Patients and Families...
Read More
February 28 is observed as Rare Diseases Day worldwide in support of millions of patients suffering from various kinds of debilitating medical conditions with hardly any approved medicines or cure available for treatment. Among these groups of patients are a..
Read More
‘Every Individual has a right to live’ Due to the lack of available treatment, patients with rare diseases have little choice but to rely on supportive therapies. There are an estimated 6,000-7,000 rare diseases which have been identified, of which..
Read More
The rare diseases causes a range of physical, cognitive and developmental disabilities and occurs in about one in 10,000 live births. Recently Rare Disease Day was observed by the Indian Society for Clinical Research (ISCR). The event held at Bengaluru..
Read More The Indian Society of Clinical Research (ISCR) and the Organisation for Rare Diseases India (ORDI) are alarmed about the lack of treatment option for 70 million rare disease patients in the country and are keen to intensify clinical research. This..
Read More