Tag: Rare Disease
Takeda receives Arogaya CIBioD Innovation & Enterprise Leadership Award
The company has recently pioneered the 'Blueprint for rare diseases' initiative designed for multi-stakeholder engagement and collaboration focused on rare diseases in India. It has helped create various innovative technology-based solutions..............................
Govt launches national crowdfunding portal for rare disease patients
The initiative has been launched in accordance with the mandate of the National Policy for Rare Diseases 2021.....................
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..................