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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..................

Landmark judgement brings hope for a rare disease patient in Delhi

Subsequent to a petition by the rare disease patient, Dharminder Singh, the Delhi High Court passed a groundbreaking judgment in which ESIC Hospital was asked to provide free treatment to him considering his dependency...................

Rare genetic brain disorder causing body shaking detected in india, coffee...

The rare genetic disorder called ADCY5-related dyskinesia results in the shaking and jerking of facial muscles, neck and hand. Reported in less than 400 cases in the world, the scientists now have found that coffee can provide positive relief to the patients...............

Rare disease patients in UP awaiting treatment support despite judicial intervention

Patients forced to run from pillar to post for treatment while central and state government struggle to work in tandem.................

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..................

Rare disease patients’ never-ending ordeal

Rare disease patients awaiting treatment despite sanction of 3 Crore rupees fund from the Karnataka Government...…………...

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..................