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