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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

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

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

Living with Isaac Syndrome – known to be having less than 40 recorded cases in India as quoted in this article – came along with baggage of issues for Rare Disease survivor Rachit Shah, throwing his life into a chase for treatment & recovery from the rare disease. Diagnosed in 2016 with Issac Syndrome (alsoRead more