Initiatives
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Initiatives
- Establish “Tele Genetic Clinics” across the country to support the Government initiatives on Implementing Rare Disease Policy 2021”
- Initiate a Comprehensive study on Rare Disease Prevalence in India for various Rare Diseases
- To conduct Clinical trials on repurposed orphan drugs, which will promote indigenous manufacturing and reduction in price
- To support treatment cost of Rare Disease Patients
The Big Question
What are the gaps?
▶- Long Diagnostic Journey
- High Treatment Cost
- Patient Identification
- Awareness among healthcare professionals
- Inadequate Diagnostic Infrastructure
- Shortage of Trained Healthcare Professionals
- Lack of Clinical Research and Clinical Studies
How we would address the challenges
▶- We will use screening tools to identify rare disease patients and subject them to Genetic testing and genome sequencing through Tele Genetic Clinics across the country
- We wanted to conduct awareness among General Practioners and physicians through Online CME’s and Awareness Programs
- We wanted to have a battery of Geneticists across the country and facilitate them with adequate training on treating rare disease patients
- We are focusing our attention on Repurposed Orphan Drugs Research and Development