Science & Society

Racefor7

posted Mar 14, 2019, 10:30 PM by Vinod Scaria   [ updated Mar 14, 2019, 10:30 PM ]

Rare Disease Day is celebrated on Feb 28 every year to increase awareness on the plight of rare diseases among the policy makers and the public. World over awareness events are conducted by multiple organisations in this regard.

Race for 7 is an awareness run organized by Organization For Rare Disease India(ORDI), a not-for-profit organisation and one of the largest patient support groups on rare diseases in the country. The event symbolically represents the 7000 rare diseases with 7000 people running for 7 kilometres across multiple cities in India.

The run is organised to address the challenges of rare disease patients and their families in India
When: Sunday, 17th March 2018. 
Where: CSIR Institute of Genomics and Integrative Biology
South Campus, Mathura Road, Delhi

CSIR IGIB being one of the major research organisations working in the area of rare diseases in the country through its multiple research and clinical support will co-host to such an event in Delhi.




Rare Disease Diagnostics features in CSIR's top 10 innovations in 2018

posted Dec 26, 2018, 2:07 AM by Vinod Scaria

The Council of Scientific and Industrial Research has had an exciting 2018 where India’s first biofuel powered flight, aerospace technology, research in rare diseases, stroke, artificial intelligence and water disinfection have seen a major boost. Ranked 9th in the world, amongst a total of 1,207 government institutions, according to Scimago Institutions ranking, the institute has come a long way. These are ten exciting achievements which are going to take shape in the year 2019.

With 72,611,605 million Indians suffering from rare diseases there is a need for cost effective genetic tests which can be provided to the people. CSIR is working with a private company for licensing of 27 approved genetic tests which can be used commercially and will be launched in 2019.

https://www.deccanchronicle.com/nation/current-affairs/261218/csir-stands-tall-with-10-innovations-in-2018.html

CSIR-IGIB Partners with Genique for Genomic Applications in Rare Genetic Diseases

posted Dec 26, 2018, 1:57 AM by Vinod Scaria   [ updated Dec 26, 2018, 1:58 AM ]

Though rare genetic diseases are individually rare and encompass a spectrum of over 7000 diseases, together they amount to a significant number in the population. It is estimated that over 300 million people suffer from one or other rare genetic disease in the world. India shares a significant proportion of this, with estimates that it is home to over 30 million people with rare genetic diseases. Without a national programme for genetic diseases, and neonatal screening, many of the diseases remain undiagnosed. The diversity in social, cultural and marriage practices wuld also mean that many diseases run in families/communities, in some times significantly impairing the social function of the families, apart from the large economic and emotional burden these families/communities go through.

Addressing the problem of Genetic Diseases in India requires concerted efforts involving patients, clinicians researchers and industry.
CSIR IGIB signed an agreement with Genique Lifesciences to develop Genomics solutions for Genetic Diseases

CSIR-IGIB partners with Sanofi Genzyme in the area of Rare Genetic Diseases

posted Dec 26, 2018, 1:54 AM by Vinod Scaria   [ updated Dec 26, 2018, 1:55 AM ]

Though rare genetic diseases are individually rare and encompass a spectrum of over 7000 diseases, together they amount to a significant number in the population. It is estimated that over 300 million people suffer from one or other rare genetic disease in the world. India shares a significant proportion of this, with estimates that it is home to over 30 million people with rare genetic diseases. Without a national programme for genetic diseases, and neonatal screening, many of the diseases remain undiagnosed. The diversity in social, cultural and marriage practices would also mean that many diseases run in families/communities, in some times significantly impairing the social function of the families, apart from the large economic and emotional burden these families/communities go through.

In furtherence of SANOFI GENZME’s commitment to patients of rare diseases and the CSIR–INSTITUTE OF GENOMICS & INTEGRATIVE BIOLOGY‘s aim to initiate a unique research program on Genomics for understanding rare diseases, Sanofi Genzyme, a division of Sanofi-Synthelabo (India) Pvt. Limited hereby agrees to collaborate with the CSIR–INSTITUTE OF GENOMICS & INTEGRATIVE BIOLOGY for a partnership in the area of clinical genomics & rare genetic diseases.

1-4 of 4