IORD CEO & President Prof Ramaiah Muthyala presents a case study on Autosomal Recessive Congenital Ichthyosis at the Undiagnosed Disease Network Conference, highlighting collaborative genomics and patient support in rare disease care.
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The Delhi High Court has extended the tenure of the National Rare Disease Committee (NRDC) for 5 years, empowering it with a broader mandate to strengthen rare disease management in India.
In this study, a three-member team of researchers led by Pragya Chaube makes a strong case for using RBSK for better management, diagnosis and treatment of rare diseases in India.
Reproduced below is the letter written to Prime Minister Shri Narendra Modi ji by IORD requesting for inclusion of World Rare Disease Day as a topic in the upcoming Mann Ki Baat Dear Shri Narendra Modi ji Sir, Sub: Request Prime Minister Shri Narendra Modi Ji to speak to the nation on the occasion ofRead more
With the idea of raising awareness for people living with a rare disease, an official video marking the World Rare Disease Day-2022 falling on February 28 was globally launched on January 31. The awareness campaign is jointly supported by 67 National Alliance patient organisations from across 59 countries including the Indian Organisation for Rare DiseasesRead more