Tag: Rare Disease
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..................
Sanofi Genzyme observes Rare Disease Day in India
The company said that it stands committed to the cause of supporting patients with rare and debilitating disorders............
Effective implementation of national rare diseases policy essential: Experts
Eminent experts have applauded the first year of National Policy for Treatment of Rare Diseases while also emphasizing on the need for its effective implementation................
Race for 7: Bangalore & Mumbai walk for rare diseases
Race for 7 which was simultaneously held in Bangalore and Mumbai in India (a smaller run was held in Jaipur). In addition, a Race for 7 was also held in Washington with a smaller event in South Carolina, a great example of a Make in India event going global.......