Advancing Rare Disease Care: Free Genetic Testing and Counseling Initiative Launched

To address the challenges posed by rare diseases in the nation, the ICMR's National Institute for Research in Reproductive and Child Health (ICMR-NIRRCH) declared its initiative to provide complimentary genetic testing and counseling services. Rare diseases are typically chronic and progressive medical conditions that pose life-threatening risks to those affected.

  • ICMR-NIRRCH initiates free genetic testing and counseling for rare diseases.
  • India has a significant population affected by rare diseases, with 72-96 million patients.
  • The Genetic Research Centre (GRC) aims to provide timely interventions and support for rare disease patients and their families.

In a pioneering move to confront the challenges posed by rare diseases, the ICMR’s National Institute for Research in Reproductive and Child Health (ICMR-NIRRCH) has unveiled a groundbreaking initiative offering complimentary genetic testing and counseling services. Rare diseases, often chronic and life-threatening, affect millions in India alone, making this initiative a crucial step toward addressing their unique healthcare needs.

The newly established Genetic Research Centre (GRC) spearheads this initiative, aiming to provide timely therapeutic interventions and essential support for patients and their families. With approval under the Pre-Conception and Pre-Natal Diagnostic Techniques Act, the GRC is poised to offer comprehensive genetic counseling and testing services, extending its reach beyond Maharashtra to cater to rare disease patients nationwide.

Access to genetic testing and counseling is pivotal for the early diagnosis and intervention of rare diseases, especially considering the absence of approved treatments for the majority of such conditions. By enhancing awareness, collaborating with healthcare institutions, and advocating for universal healthcare access, the GRC endeavors to alleviate the societal burden of rare diseases and contribute to the broader goal of ensuring health equity for all.