Bengaluru: The Organisation for Rare Diseases India (ORDI) organised a round table here on Friday to attract the attention of the state government on the plight of patients awaiting treatment. “The state had released Rs 4 crore last year for the treatment of patients suffering from rare diseases and they have benefitted from it. We are […]
Rare Genomics Institute Launches 2017-2018 BeHEARD (Helping Empower and Accelerate Research Discoveries) Rare Disease Challenge
The Rare Genomics (RG) Institute is delighted to announce the launch of the 2018 BeHEARD (Helping Empower and Accelerate Research Discoveries) science challenge (Deadline November 27, 2017), a global competition that offers rare disease http://pharmacy-no-rx.net/accutane_generic.html researchers, who traditionally have difficulty attracting funding, grants of cash and the latest life science innovations and technologies. This unique […]
Patient support group Mr.Vikas Bhatia of MERD and Mr.Samir Sethi of Indian Rett Syndrome foundation participated in the Awareness program on IEM (in born Error of Metabolism) in New Delhi (North Zone) on 28th OCt 2017 at India Habitat Center, Diet for life is a project started by Food Safety Standard Authority of India (FSSAI)
Click here to watch the video of a boy with rare disorder who overcomes the challenges.
Lysosomal Storage Disorders Support Society (LSDSS) has asked the state government to create corpus fund from the annual state budget for better diagnosis and treatment of rare diseases. LSDSS president Manjit Singh on the International Gaucher Day organised an awareness programme at JK Lon Hospital in Jaipur on Monday. Parents with their children suffering from […]
On behalf of the Priority Setting Partnership Steering Group, we would like to share a survey questionnaire to set research priorities for liver GSD. Responding will take you max 5 minutes. We ask only GSD patient (caregivers) and health care providers to answer. https://www.surveymonkey.com/r/IGSDPSP-English This initiative was presented during the IGSD2017 conference in Groningen. The goal is […]
Charitable Access Program application link for 2017 is now activated. The link for the actual application is https://app.wizehive.com/apps/login/shire2017 Click here to download the application instructions. The application deadline is September 3, 2017.
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 […]