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The youngest Bikeathon participant was Korukonda lyosha, aged only eight years, while the oldest walkathon participant was Subhash Pande, aged 76 years at IORD’s Bikeathon │ Walkathon │ For Rare

Join us to be the voice of 300 million affected people worldwide on World Rare Disease Day-2023. The not-for-profit Indian Organization for Rare Diseases (IORD) is excited to invite you all to an awareness bikeathon and walkathon being organised at the Necklace Road, Hyderabad on 26th February at 6.30 AM on Sunday.  Please register forRead more

The United States Federal Drug Administration (FDA) has approved a new gene therapy treatment for a rare blood clotting disease called Hemophilia B. The drug Hemgenix costs US$ 3.5mn (Rs 28.52 Crore).  Until now, the world’s costliest drug was Zolgensma – a drug for gene therapy used to treat children below two years diagnosed withRead more

Telangana: In the run-up to the implementation of the ground-breaking proposal to count rare disease patients within Telangana state, the Indian Organization for Rare Diseases (IORD) organised an awareness event on Rare Diseases for health workers including Accredited Social Health Activist (ASHA) members at Kamepally village in Khammam, Telangana on 10 November 2022. While addressing theRead more

(This is an abridged version of the presentation delivered by Dr P. Harihara Murthy, MBBS, MS, DLO, Sr. Consultant E.N. T., Head & Neck Surgeon & Anthroposophic Physician, Swasthya Niketan, Koramangala Bangalore, Murthy Health & Research Centre, Koramangala, Bangalore & Apollo Spectra Hospital, Koramangala, Bangalore at the ‘Dr N Srinivasa Rao Memorial Symposium – Rare DiseasesRead more

(This is an abridged version of the presentation delivered by Dr Kameshwar Rao, Executive Director, National Health Authority at the ‘Dr N Srinivasa Rao Memorial Symposium – Rare Diseases & Alternative Treatment’ organized by IORD at Hyderabad on 25th June.) Rare Diseases in Numbers: The World Health Organisation (WHO) estimates that there are an averageRead more

In what can be termed as a promising development for the rare disease community, a pilot study of rare undiagnosed diseases has shown that the Whole Genome Sequencing improves diagnosis by 25%. In this pilot study, the researchers from the University of Exeter, Genomics England and Queen Mary University of London pooled genes of 4,660Read 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

Being compassionate to the needs of rare disease patients has been a pet concern for late Dr Nyapati Srinivasa Rao, 61, in his long association with the Indian Organisation for Rare Diseases (IORD) as a managing committee (MC) member. The humble and always gentle doctor had his feet deeply grounded on research in alternative medicineRead more

If you are a Rare Disease patient in need of a disability certificate, you may no longer need to face the hassle of going around offices as the Department of Empowerment of Persons with Disabilities (DEPwD), Government of India, has now made it mandatory for all physically challenged in India to apply for one onlyRead more