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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

(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

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

The Rs 16-cr drug named Zolgensma was administered to 23-month-old baby Ellen with Spinal Muscular Atrophy (SMA) Type 1, which is an extremely rare genetic disease. If one is diagnosed with ultra-rare genetic disease Spinal Muscular Atrophy (SMA) Type 1 at the earliest stage, the only option available now is to get Zolgensma, the world’sRead more

In what is touted as the first time in India and 4th case in the world, a joint team of doctors from the state government run Osmania General Hospital & Niloufer Hospitals performed a live liver transplantation on an 8-month-old child diagnosed with an extremely rare NISCH syndrome. The marathon surgical procedure by the teamRead 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 by the Union Ministry of Health & Family Welfare Rare Diseases Cell, New Delhi. In aRead more