+91-9666438880
indiaord@gmail.com
IORD – Indian Organization for Rare DiseasesIORD – Indian Organization for Rare DiseasesIORD – Indian Organization for Rare DiseasesIORD – Indian Organization for Rare Diseases
  • 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

Blog

Home 2024 July
Indian Organisation for Rare Diseases (IORD) to host Indian Rare Diseases Nurses Network webinar on 8th August, 2024

IORD to Host Indian Rare Diseases Nurses Network Webinar on 8th August

By IORD | Events, IORD Updates, News | 0 comment | 19 July, 2024 | 0

Registration is Now Open for the Rare Diseases Nurses Network Webinar Hosted by the Indian Organisation for Rare Diseases (IORD). It will Highlight the Critical Role Nurses Play in Rare and Undiagnosed Diseases Worldwide.  Rare and undiagnosed diseases (RUD) have gained global recognition as a significant health priority following the United Nations (UN) Resolution onRead more

The following excerpt is from a Times Now news story dated July 4, 2024, highlighting the challenges in addressing the unavailability of orphan drugs in India, despite the country's successful development of COVID vaccines. It features insights from Prof. Ramaiah Muthyala, CEO & President of IORD.

Despite COVID Vaccine Success, Why India Lags in Rare Disease Drug Attention?

By IORD | IORD in News, IORD Updates, Times Now | 0 comment | 9 July, 2024 | 0

The following excerpt is from a Times Now news story dated July 4, 2024, highlighting the challenges in addressing the unavailability of orphan drugs in India, despite the country’s successful development of COVID vaccines. It features insights from Prof. Ramaiah Muthyala, CEO & President of IORD. Dr Ramaiah Muthyala questions why despite being the pharmacyRead more

The following excerpt is from an Economic Times news story dated June 23, 2024, discussing the policy hurdles affecting high cost for orphan drugs in India. It features Prof. Ramaiah Muthyala, CEO & President of IORD.

High costs of orphan drugs: Patients pay the price for policy hurdles in India

By IORD | Economic Times, IORD in News, IORD Updates, Rare Disease News | 0 comment | 9 July, 2024 | 0

The following excerpt is from an Economic Times news story dated June 24, 2024, discussing the policy hurdles affecting the unavailability of orphan drugs in India, featuring Prof. Ramaiah Muthyala, CEO & President of IORD. India manufactures most of the key active pharmaceutical ingredients (APIs) for over 400 FDA-approved orphan drugs meant to treat rareRead more

The following excerpt is from a Times of India news story dated June 23, 2024, discussing the unavailability of orphan drugs in India, featuring Prof. Ramaiah Muthyala, CEO & President of IORD.

India key market for APIs, but patients still paying crores to buy orphan drugs

By IORD | IORD in News, News, Rare Disease News, Times of India | 0 comment | 9 July, 2024 | 1

The following excerpt is from a Times of India news story dated June 23, 2024, discussing the unavailability of orphan drugs in India, featuring Prof. Ramaiah Muthyala, CEO & President of IORD.  HYDERABAD: Though India manufactures most of the key active pharmaceutical ingredients (APIs) for over 400 FDA-approved orphan drugs for rare diseases, patients backRead more

Categories

  • ANI
  • Deccan Chronicle
  • Economic Times
  • Eenadu
  • Events
  • IORD in News
  • IORD Updates
  • News
  • Pharmabiz.com
  • Rare Disease News
  • Telangana Today
  • The Hans India
  • The Hindu
  • The Pioneer
  • Times Now
  • Times of India
  • Uncategorised
  • Vaartha

Recent Posts

  • My Battle with Porphyria: Why Jagruti Urges Nationwide Access to Hemin
  • May 2025: Rare Disease Updates, New Discoveries, Diagnostics, and Therapies
  • 78th WHA Takes Historic Step with Rare Diseases Resolution, 10-Year Global Plan Approved
  • India’s Rare Disease Crisis: Why Grassroots Solutions Are Urgently Needed
  • Advancing Rare Disease Awareness in India: Dr. Ramaiah Muthyala’s Strategic Insights

Archives

  • June 2025
  • May 2025
  • April 2025
  • March 2025
  • February 2025
  • January 2025
  • December 2024
  • November 2024
  • September 2024
  • July 2024
  • June 2024
  • May 2024
  • March 2024
  • February 2024
  • December 2023
  • October 2023
  • July 2023
  • June 2023
  • May 2023
  • April 2023
  • March 2023
  • February 2023
  • January 2023
  • December 2022
  • November 2022
  • October 2022
  • September 2022
  • August 2022
  • June 2022
  • May 2022
  • April 2022
  • March 2022
  • February 2022
  • January 2022
  • December 2021
  • November 2021
  • October 2021
  • September 2021
  • July 2021
  • May 2021
  • April 2021
  • November 2020
  • March 2020
  • February 2020
  • January 2020
  • February 2019
  • January 2018
  • September 2015

Follow Us

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.

RARE DISEASES

  • Rare Blood Diseases
  • Rare Heart Diseases
  • Rare Fungal Diseases
  • Rare Kidney Diseases
  • Rare Newborn Diseases
  • more...

SERVICES

  • Research
  • Let's Come Together
  • Partner With Us
  • Volunteers
  • Privacy Policy
  • Sitemap

CONTACT US

Indian Organization For Rare Diseases
Reg. Office (India): Plot 397, Road 22b, Jubilee Hills, Hyderabad (Telangana) 500033, Telangana, India

Phone: +91-9666438880

Email: indiaord@gmail.com

© 2020 Indian Organization For Rare Diseases | All Rights Reserved. Powered By Digital Dynamics
  • 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