Tag: Rare Disease
Takeda spearheads initiatives to strengthen health system for rare diseases in...
These initiatives aim to improve access to healthcare for rare disease patients
MedGenome Labs makes strides in rare disease diagnosis with launch of...
The company is first commercial lab to offer this new genetic test that will help individuals with FSHD1 to get an early and accurate diagnosis
Takeda & UNGCNI joint initiative works towards strengthening rare disease treatment...
Orchestrating collaborative actions to generate rare disease crowdfunding
MedGenome’s novel software to detect genetic variants for rare diseases &...
The software claims to accurately predict and rank a pathogenic variant in 90% of rare diseases cases with no or minimum manual intervention
Dr. Sheela Nampoothiri becomes co-chair of ICMR’s Rare Diseases National Consortium’s...
Dr. Ratna Puri from Sir Ganga Ram Hospital, Delhi is the Chairperson of the expert committee
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.......................