Blog

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

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

Khammam: In a unique initiative to identify and count rare disease populations as part of a pilot study in Telangana, the Indian Organization for Rare Diseases (IORD) has started sensitization and interactive awareness meets with health workers in the Khammam district of Telangana. The pilot study – supported by Telangana state health commissioner Dr Sweta MohantyRead 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

(This is an abridged version of the presentation titled “Clinical Assessment of European Mistletoe Extracts (Viscum Album) Along with Homeopathy in III and IV Stage Cancers”. It was delivered by Dr Ravi Doctor, Associate Professor – VHMC Faculty – International Integrated Oncology Training – Indo Swiss Faculty – Fellowship Prog – Palliative Oncology Maharashtra UniversityRead more

(This is an abridged version of the presentation delivered by Dr I. Rajyalakshmi Homeopathy Practitioner, Hyderabad at the ‘Dr N Srinivasa Rao Memorial Symposium – Rare Diseases & Alternative Treatment’ organized by IORD at Hyderabad on 25th June) Rare disease: Definition The World Health Organization (WHO) defines a rare disease as a life-long debilitating diseaseRead 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