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National Consortium for Research and Development on therapeutics for Rare Diseases:

The National Consortium is formed as a first step towards improving coordination of research efforts in India. National Policy on Rare Diseases 2021 is in place and now a Guideline needs to be formulated to emphasize collaboration in rare disease research, the involvement of patients and their representatives in all relevant aspects of research, as well as the sharing of data and resources. The Guidelines are to provide guidance on ontologies, diagnostics, biomarkers, patient registries, biobanks, natural history, therapeutics, models, publication, intellectual property, and communication including data sharing.

Vision:

To promote research and development in the field of rare diseases for diagnosis and treatment of rare diseases.

Mission

Partnering institutes, nodal centres, individual researchers, the rare diseases research groups and patient organizations within the consortium would work together to study rare diseases across the nation towards better diagnosis and therapy.

National Consortium for Research and Development on therapeutics for Rare Diseases (NCRDTRD) if may include following ACT

  1. Research and Development in the field of Rare diseases for diagnosis and treatment may include
    • Development/ validation of diagnostic markers.
    • To provide funding for the development of indigenous alternatives for available therapies.
    • In order to reduce the cost of some available therapies, to promote Pharma companies to invest in house production of available treatments e.g- Enzyme replacement therapies.

  2. Integrated Research Platform for the development of
    • New drugs (synthetic molecules, stem cells, gene therapy etc.)
    • Research on repurposing of drugs
    • Research on biosimilars

Research in Rare diseases:

  • Creation of a ICMR Task Force for Rare Disease (RD) Research