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The court direction – given on 22 December 2022 – came following a batch of petitions filed by parents of children suffering from rare diseases such as DMD and hunter syndrome. In a relief for scores of rare disease patients suffering from Duchenne Muscular Dystrophy (DMD) and Mucopolysaccharidosis II or MPS II (Hunter Syndrome) patients,Read more

The 100-day countdown for the World Rare Disease Day-2023 celebration, which falls on February 28, has started with the right earnestness. This year, for creating awareness among the people, short multi-lingual animation videos in several world languages with subtitles were launched for easy understanding for the local population. They include Indian languages like Hindi, Bengali,Read more

Project Y and the Rare Care Centre at Perth, Australia, Children’s Hospital have partnered with the Indian Organisation for Rare Diseases (IORD) to improve rare disease visibility and recognition on a global scale Following successful advocacy from IORD, the health commissioner of India’s state of Telangana approved a ground-breaking proposal to count rare disease patientsRead more

HAEMOPHILIA: An Inherited Condition (This is an abridged version of the presentation delivered by Dr V. Chandrasekhar, MD, FICP, Professor in General Medicine, Kakatiya Medical College & Superintendent, Mahatma Gandhi Memorial Hospital, Warangal, Telangana at the ‘Dr N Srinivasa Rao Memorial Symposium – Rare Diseases & Alternative Treatment’ organized by IORD at Hyderabad on 25thRead more

India has the largest rare disease population in the world, said speakers attending the ‘Dr N Srinivasa Rao Memorial Symposium – Rare Diseases & Alternative Treatment’ at Hyderabad on 25th June, saying it is home to an estimated 25% of the world’s rare disease burden. Every year, it is estimated that some 250 odd newRead more

In what is seen as a step in the right direction, the government has hiked the grant for rare disease treatment from Rs 20 lakh to Rs 50 lakh as per a new office memorandum issued on May 19, 2022 by the Union Ministry of Health & Family Welfare Rare Diseases Cell, New Delhi. InRead more

Known otherwise as Kleine-Levin Syndrome (KLS), Sleeping Beauty Syndrome is known to be one of the extremely rarest of rare diseases with medical literature recording only about 500 cases around the world.  In this rare condition, the body craves excessive sleep for 15-20 hours (hypersomnolence or hypersomnia) and overeating (compulsive hyperphagia) with accompanying neurological tendenciesRead more

The Indian Organization for Rare Diseases (IORD) is thrilled to call attention to the Word Rare Disease Day-2022 by organizing series of events to raise awareness about the issues of millions of Indians living with a rare disease. The World Rare Disease Day is observed every year on the last day of February (28th February).Read more

The Ataxia Awareness Society (AAS) – an NGO dedicated to spread awareness about the rare disease, help the sufferers and encourage research in this field – is organising a webinar on Ataxia on 18th December (Saturday) at 7:30 PM IST. Being organised in collaboration with the Indian Organisation for Rare Diseases (IORD) & AAS, theRead more

It is a herculean task to get insurance cover for rare diseases as they don’t usually exist for such patients. With over 7000-8000 rare diseases, some of which have a costly treatment protocol while many others have no available cure at all, it becomes all the more difficult. Here is a news story that mayRead more