Information, Education & Communication (IEC)

Demystifying Rare Genetic Diseases

Genetic disorders are far from rare in India, owing to the high population density in the country, which translates to a very high disease burden. National Policy for Rare Diseases, 2021, states that ‘there is an immediate need to create awareness amongst the general public, patients & their families and doctors, training of doctors for early and accurate diagnosis, standardization of diagnostic modalities and development of newer diagnostic and therapeutic tools.’

At TIGS, we are committed to accelerating diagnostics and therapeutics. With the Demystifying Rare Genetic Diseases project, we are developing innovative Information, Education and Communication (IEC) materials to engage relevant stakeholders to:

  • Increase awareness and understanding of RGDs among clinicians and the general public
  • Accelerate diagnostics for patients through the awareness campaign
  • Empower individuals affected by RGDs through access to factual and reliable information
  • Promote collaborations and knowledge exchange among experts, clinicians, and science communicators

National Policy for Rare Diseases (NPRD), 2021, is the latest policy addressing the challenges of rare diseases in India. Through our Demystifying Rare Genetic Diseases project, we are shining a spotlight on the key points, strategies and recommendations mentioned in NPRD, 2021.