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Clinical assessment of European Mistletoe Extracts (Viscum Album) along with Homeopathy in III and IV stage cancers

Role of Mistletoe with Homeopathy in III & IV Stage Cancers: By Dr Ravi Doctor

By IORD | IORD in News, IORD Updates, Rare Disease News | 0 comment | 29 September, 2022 | 1

(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

RARE DISEASES & ALTERNATE MEDICINE: Dr I. Rajyalakshmi

RARE DISEASES & ALTERNATE MEDICINE: Dr I. Rajyalakshmi

By IORD | IORD Updates, Rare Disease News | 0 comment | 23 September, 2022 | 1

(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

IORD Partnership: Counting Rare Disease Patients in Telangana State, India

By IORD | IORD Updates, Rare Disease News | 0 comment | 13 September, 2022 | 0

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

Conventional And Unconventional Medicines in Treating Haemophilia

Conventional And Unconventional Medicines in Treating Haemophilia: Dr V. Chandrasekhar

By IORD | Events, IORD Updates, Rare Disease News | 0 comment | 7 September, 2022 | 0

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

Novartis Managed Access Programme

Telangana baby gets world’s costliest drug for free under Novartis Managed Access Programme

By IORD | Rare Disease News | 0 comment | 8 August, 2022 | 4

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

Osmania General Hospital Performs Liver Transplantation With Extremely Rare NISCH Syndrome in 8-month child

Govt docs Perform Liver Transplant on 8-month child with Extremely Rare NISCH Syndrome

By IORD | Rare Disease News | 0 comment | 30 June, 2022 | 1

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

Dr N Srinivasa Rao Memorial Symposium - Rare Diseases & Alternative Treatment'

‘25% of World’s Rare Disease Patients are in India’

By IORD | IORD Updates | 0 comment | 27 June, 2022 | 0

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

India Increases Rare Disease Treatment Grant to ₹50 Lakh – Big Relief for Patients and Families Union Health Ministry Update

Rare Disease Treatment Amount Hiked to Rs 50 lakh, Covers All Diseases Now!

By IORD | Rare Disease News | 0 comment | 27 May, 2022 | 2

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

Propionic acidemia ultra rare disease

Advik Pravin Deshmukh: Living with Ultra Rare Disease Propionic Acidemia

By IORD | Rare Disease News | 0 comment | 14 May, 2022 | 0

Nine-month-old Advik Pravin Deshmukh from Maharashtra has been battling Propionic Acidemia – an ultra-rare disorder. It leaves one with a serious and life-threatening inherited metabolic disorder.   For Advik Pravin, the diagnosis of this rare metabolic disease can be termed to have happened on time as there is more likelihood of this ultra-rare disease not gettingRead more

Orphan Drugs Clinical Trials

Clinical Trials data of 220 Orphan Drugs Go Missing in US Govt Records: Study

By IORD | Rare Disease News | 0 comment | 7 May, 2022 | 0

There seem to be wide gaps in the FDA approval process as clinical trials data of 220 approved Orphan Drugs for rare diseases go missing in the US-based public registry ClinicalTrials.gov, finds a new study by three Indian researchers. The research study was undertaken by a three-member team of Mohua Chakraborty Choudhury, Indraneel Chakraborty andRead more

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  • India: Rare Ophthalmic Disorders Take Centrestage at World Rare Disease Day-2026
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IORD

Indian Organization For Rare Diseases (IORD), a not-for-profit umbrella organization represents interests of all stakeholders of Rare Diseases in India including individual patients, patient support groups, health policy advocates and health care providers.

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IORD – Indian Organization for Rare Diseases