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National policy for rare diseases fails to meet expectations: ORDI

As per Organization for Rare Diseases India (ORDI), the National Policy for Rare Diseases, 2021 abridges the ‘right to health’ by ignoring the true needs of rare disease community in India......................

From delayed diagnosis to lack of funds: India’s shaky rare disease...

India does not have a healthcare policy for Rare Diseases in place, and whatever little benefits exist are only applicable for BPL Families, writes, Prasanna Shirol, Founder Director, ORDI.....................

Racefor7: Over 4000 participants virtually unite to raise awareness for rare...

In the backdrop of 70 million rare disease patients in India, Organization for Rare Diseases India (ORDI) through the event hopes to create opportunities for more voices from the rare disease community to be heard across all stakeholder.......................

ORDI to hold Racefor7 to raise awareness & advocacy for rare...

The fifth edition of the vent by ORDI will be on a much larger scale than before with events scheduled in 20 India cities..................

Experts laud Karnataka govt’s timely initiatives for rare diseases patients

Karnataka government has been providing treatment to adult-onset Pompe patients and Gaucher patients since 2016. Experts feel other governments must learn from this example..................

1 in 20 Indians affected by a rare disease: ORDI

The Organization for Rare Diseases India (ORDI) is organizing the ‘Race For 7’ run to raise awareness for rare disease patients in multiple cities across India during 2019..................

Clinical research will help us find more effective treatment for rare...

The Indian Society for Clinical Research (ISCR) is of the view that more research in required in India to address the unique needs of rare disease patients......

Race for 7: Bengaluru matches strides with rare disease patients

Thousands care for rare event held to commemorate rare disease day.......

Race for 7 to raise awareness of rare diseases

The 7000 metres of race is to bring attention to the needs of estimated 70 million rare disease patients in India..........

Need to build global confidence & trust in clinical research in...

ISCR Conference concludes on note of optimism and hope in Mumbai with stakeholders agreeing on the need to take proactive approach to quality to mitigate negative perceptions....