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IORD – Indian Organization for Rare DiseasesIORD – Indian Organization for Rare DiseasesIORD – Indian Organization for Rare DiseasesIORD – Indian Organization for Rare Diseases
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Dr P. Harihara Murthy

Mistletoe: Introduction and Basis for use in Cancers

By IORD | 0 comment
(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, Ko
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Rare Diseases Policy Perspectives in India

Rare Diseases Policy Perspectives

By IORD | 0 comment
(This is an abridged version of the presentation delivered by Dr KameshwarRao, Executive Director, National Health Authority at the ‘Dr N Srinivasa RaoMemorial Symposium – Rare Diseases & Alternat
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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 | 0 comment
(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 Ra
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RARE DISEASES & ALTERNATE MEDICINE: Dr I. Rajyalakshmi

RARE DISEASES & ALTERNATE MEDICINE: Dr I. Rajyalakshmi

By IORD | 0 comment
(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 Trea
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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 | 0 comment
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
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Conventional And Unconventional Medicines in Treating Haemophilia

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

By IORD | 0 comment
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 & Superinten
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Novartis Managed Access Programme

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

By IORD | 0 comment
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
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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 | 0 comment
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 t
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Dr N Srinivasa Rao Memorial Symposium - Rare Diseases & Alternative Treatment'

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

By IORD | 0 comment
India has thelargest rare disease population in the world, said speakers attending the 'Dr NSrinivasa Rao Memorial Symposium - Rare Diseases & Alternative Treatment' atHyderabad on 25th June, sayi
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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 | 0 comment
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 t
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Propionic acidemia ultra rare disease

Advik Pravin Deshmukh: Living with Ultra Rare Disease Propionic Acidemia

By IORD | 0 comment
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.&nbs
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Orphan Drugs Clinical Trials

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

By IORD | 0 comment
There seem to be wide gaps in the FDA approval process asclinical trials data of 220 approved Orphan Drugs for rare diseases go missingin the US-based public registry ClinicalTrials.gov, finds a new s
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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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  • Home
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    • Management Committee
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  • Rare Diseases
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  • Gallery
    • Photo Gallery
      • World Rare Disease Day – 2023
      • World Rare Disease Day 2020
    • Video Gallery
      • World Rare Disease Day – 2020
      • World Rare Disease Day – 2019
      • World Rare Disease Day – 2018
  • Blog
  • Contact Us
IORD – Indian Organization for Rare Diseases