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Sunday 3 November 2019

Consortium of Rare Genetic and Bone Marrow Disorders India Network@NitteDU - NUCSER

As a first of its kind initiative in this region, Nitte (Deemed to be University) has set up a Consortium of Rare Genetic and Bone Marrow Disorders India Network@NITTEDU (CRG.BMD|IN)

The website of the consortium can be accessed at the following link: ncrdbmd.nitte.edu.in The primary objective of this consortium is to carry out a systematic study on select rare genetic diseases and inherited/acquired bone marrow failure disorders through the use of genomic technologies and genetic testing methods for improved diagnosis and better clinical outcome in patients.

Rare Genetic Disorders (RGD) are diseases with a prevalence of 1 or less per 1000 population. More than 95% of these diseases do not have any cure and about 80 % of them are caused by genetic defects. According to the National Policy for treatment of rare diseases (2017, Govt. of India), rare diseases in India affect a staggering 72 to 96 million people. Bone Marrow Failure Syndromes (BMFS) are rare disorders characterized by defects in the stem cells of the bone marrow leading to lack of production of one or more essential blood cell. Although the incidences of BMFS are very high in the country, little information on the aetiology and genetic basis of these diseases is available. The consortium would bring together the clinicians and researchers under one platform and will allow exchange of ideas to understand and study the conditions in the affected people.

Dr. Anirban Chakraborty, Deputy Director, Nitte University Centre for Science Education & Research, is the founder of this consortium along with Dr Arati Khanna Gupta, Genetic Consultant, Bangalore.

The formal inauguration of the consortium was held on 24th October 2019 at the University. The chief guest for the program was Prof. Paul Coucke, Director, Centre for Medical Genetics, Ghent University, Belgium while the guest of honour was T. S Rao, former advisor, Department of Biotechnology, India. On this occasion, the website of the consortium (ncrdbmd.nitte.edu.in) was also officially launched by the guests.

Speaking on the occasion, Vice Chancellor NU Prof. Dr. Satheesh Kumar Bhandary congratulated the team for this project and emphasised on the role of the universities in health science research and development across the country through these unique initiatives.

Dr. M.S. Moodithaya, Pro Vice-Chancellor, NitteDU, Prof. Dr. Alka Kulkarni, Registrar NitteDU, Dr. Iddya Karunasagar, Senior Director (International Relations), NitteDU, and Dr. Indrani Karunasagar, Director (R & D) were present.











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