Rare disease policy needs to be implemented immediately: Prasanna Shirol, Co- Founder & Executive Director, ORDI
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. Edited excerpts: Why does India need a rare disease policy? There are around 7000 rare diseases in the world but in India […]
Lysosomal Storage Disorders (LSDs) are a group of over 50 rare, life-threatening, chronically debilitating diseases that occur due to the deficiency of specific enzymes in the body. With an aim of spreading awareness on rare, genetic disorders known as Lysosomal Storage Disorders and their impact on individual lives, Lysosomal Storage Disorders Support Society, India (LSDSS), […]
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Bengaluru: The Organization for Rare Diseases India (ORDI), a non-profit organization committed to addressing the challenges of the rare disease community in the country, on Thursday announced the launch of 2017 Race for 7. Launched in 2016, Race for 7 is a 7000-metre run/walk to raise awareness for the 7000 documented rare diseases and the intent is […]
Rare Genomics Institute and ORDI are recipients of Sanofi Genzyme’s PAL Award 2016 to Develop Rare Disease Online Learning Modules
Los Angeles, CA and Herndon, VA January 31, 2017. Rare Genomics Institute (RG) and the Organization for Rare Diseases India (ORDI) announced today that they are one of the recipients of Sanofi Genzyme’s 6th annual Patient Advocacy Leadership (PAL) Awards for 2016. RG and ORDI have won financial support for the development and dissemination of […]
ORDIndia announces research collaboration with George Mason University, USA with the newly established center for the study of chronic metabolic and rare diseases (CSCMRD). ORDI co-founder, Dr. Harsha Rajasimha to serve as Co-Director of the center along with Dr. Ancha Baranova, Associate Professor, George Mason University. The center webpages can be accessed at: http://cscmd.cos.gmu.edu/index.html Rare […]