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IORD & Rare Diseases in India: Impact, Initiatives & Challenges

IORD & Rare Diseases in India: Impact, Initiatives & Challenges

By IORD | 0 comment
Rare diseases, though affecting a small percentage of the population, represent a significant public health challenge in India. The Indian Organisation for Rare Diseases (IORD) has been at the forefro
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IORD Webinar on Global Burden of Rare Diseases: Issues and Challenges

Registration Open for Webinar on Global Burden of Rare Diseases: Issues and Challenges

By IORD | 0 comment
Join an expert-led webinar exploring the complexities of rare diseases, featuring insights from IORD CEO & President Prof. Ramaiah MuthyalaRare diseases are a pressing global health issue, with an
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Indian Organisation for Rare Diseases represented India at Rare Diseases International (RDI) Membership Meeting held on October 21-22, 2024, in Barcelona, Spain.

IORD Champions Rare Disease Advocacy at RDI Meeting in Barcelona

By IORD | 0 comment
The following excerpt is  from a presentation delivered by Krishnaji Rao Muthyala, Secretary of the Indian Organization for Rare Diseases (IORD), at the Rare Diseases International (RDI) Membership Me
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The following is an excerpt from a panel discussion on Muscular Dystrophy by medical experts and members of BharathMD Foundation, a Parent Advocacy Organization of Muscular Dystrophy. The insights shared during this discussion highlight the importance of awareness, early diagnosis, and access to resources for families navigating the challenges of Muscular Dystrophy.

Muscular Dystrophy Complexities: Insights from Experts and Parent Advocacy Group

By IORD | 0 comment
The following is an excerpt from a panel discussion on Zee Telugu on Muscular Dystrophy featuring medical experts and members of the BharathMD Foundation, a parent advocacy organization for Muscular D
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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 | 0 comment
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 Undiagnose
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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 | 0 comment
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 develop
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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 | 0 comment
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, C
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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 | 0 comment
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. HY
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Registration is now open for the 16th ICORD Annual Meeting in Argentina. Interested rare disease stakeholders, including professionals and researchers from around the world, are invited to join the 16th Annual ICORD meeting for meaningful discourse and valuable insights.

ICORD to Host its 16th Annual Meeting in Argentina on July 24-25

By IORD | 0 comment
The Indian Organisation for Rare Diseases is an institutional partner of ICORD.Buenos Aires: The 16th ICORD Annual Meeting, themed "Incentivizing Science and a Comprehensive Program for Rare Diseases,
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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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Email: indiaord@gmail.com

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  • Home
  • About Us
    • Management Committee
    • Advisory Board
    • Newsletters
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  • Rare Diseases
  • Research
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  • 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