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Ramaiah Muthyala, President & CEO, Indian Organization for Rare Diseases delivers a talk at the National Homeopathic Scientific Seminar-24 in Hyderabad.

Homeopathy Shows Promise in Enhancing Treatment for Rare Disorders: Prof Ramaiah Muthyala

By IORD | 0 comment
The following is an excerpt from an address on Alternate Therapies for Rare Diseases delivered by Prof Ramaiah Muthyala, President & CEO, Indian Organization for Rare Diseases at the National Home
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12th European Conference on Rare Diseases & Orphan Products

Registration Open for 12th European Conference on Rare Diseases & Orphan Products

By IORD | 0 comment
Registrations are now open for the 12th European Conference on Rare Diseases & Orphan Products (ECRD), scheduled to take place on May 15-16, 2024, at The Square venue in Brussels.Said to be one th
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AIIMS Bhopal Named 12th Centre of Excellence for Rare Disease Treatment in India – Advancing National Rare Disease Policy

Bhopal AIIMS becomes 12th Centre of Excellence for Rare Disease Treatment

By IORD | 0 comment
The Union Health Ministry has designated Bhopal AIIMS in Madhya Pradesh as a Centre of Excellence (CoE) for treating rare diseases, making it the 12th such hospital in the country under the Rare Disea
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Indian Pharma companies to roll out cheaper drugs for four rare diseases: Tyrosinemia Type 1 Gaucher’s Disease Wilson’s Disease Dravet-Lennox Gastaut Syndrome

IORD Advocacy: Indian Innovations Slash Costs of 4 Rare Disease Drugs Drastically

By IORD | 0 comment
In a groundbreaking move, Indian drug manufacturers have not only successfully developed medicines for Tyrosinemia Type 1, Gaucher’s Disease, Wilson’s Disease, and Dravet-Lennox Gastaut Syndrome but h
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India Launches Pharma-MedTech & PRIP Schemes to Boost R&D in Rare Disease Sector

India Launches Pharma-MedTech & PRIP Schemes to Boost R&D in Rare Disease Sector

By IORD | 0 comment
In a boost for rare disease advocacy in India, the Indian government has launched the "National Policy on Research and Development and Innovation in Pharma-MedTech Sector in India" and the "Scheme for
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India needs office of orphan products to fast track drug development for rare diseases

Empowering India’s Rare Disease Battle: Urgent Need for an Office of Orphan Products

By IORD | 0 comment
(This article is written by Prof RamaiahMuthyala, IORD CEO & President and first appeared in the portal Pharmaclick.co.in in its blog section. Theoriginal article can be accessed here) Recent fund
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IORD CEO Prof Ramaiah Muthyala Attends UN Side-Event on Universal Health Coverage for Rare Diseases at 78th UN General Assembly Summit

IORD CEO Prof Ramaiah Attends Rare Diseases Event at 78th UN General Assembly Summit

By IORD | 0 comment
New York: In a momentous gathering at the 78th UN General Assembly Summit in New York on September 21, 2023, Mr Ramaiah Muthyala, President and CEO of IORD, took part in the prestigious formal Side-Ev
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GST Relief on Rare Disease Drugs Import & Food for Special Medical Purposes for Personal Use, Pharma Sector says Not Enough

GST Relief on Rare Disease Drugs Import, Pharma Sector & RD Kin Say Not Enough

By IORD | 0 comment
The GST Council in its 50th meeting on exempted the Integrated Goods and Services Tax (IGST) on medicines and Food for Special Medical Purposes (FSMP) used for personal use & treatment of rare dis
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How Rashtriya Bal Swasthya Karyakram can be used to manage rare diseases in India

Research Publication: How to Manage Rare Disease with Rashtriya Bal Swasthya Karyakram

By IORD | 0 comment
This is an excerpt from a research paper titled Expansion of India’s national child healthcare programme, Rashtriya Bal Swasthya Karyakram (RBSK), for rare Disease management: a health policy perspect
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Lack of Coordination Between Centre, CoE Delays Treatment for Rare Disease Patients

Lack of Coordination Between Centre, CoE Delays Treatment for Rare Disease Patients

By IORD | 0 comment
The coordination among the 11 Centres of Excellence (CoE) for Rare Diseases and their communication with the Ministry of Health and Family Welfare's technical committee appears to be significantly ina
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Delhi High Court orders constitution of 5-member committee for Implementing National Rare Disease Policy, 2021

Delhi High Court Appoints 5-member committee for Implementing Rare Disease Policy, 2021

By IORD | 0 comment
In a significant development for the entire rare disease community and stakeholders in India, the Delhi High Court has ordered steps for implementing the National Rare Disease Policy, 2021 formulated
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Boosting Rare Disease Advocacy: India Approves National Medical Devices Policy to Drive Growth and Innovation

IORD Advocacy: Rare Diseases get focus in New Medical Devices Policy

By IORD | 0 comment
When the Union Cabinet, chaired by Prime Minister Shri Narendra Modi, approved the National Medical Devices Policy, 2023 on April 26, it came as a shot in the arm for rare disease advocacy Indian Orga
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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
  • About Us
    • Management Committee
    • Advisory Board
    • Newsletters
    • Newsletter Subscription
  • Rare Diseases
  • Research
  • Services
  • Donate
  • 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