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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 | Events, IORD in News, News | 0 comment | 19 November, 2024 | 0

Join an expert-led webinar exploring the complexities of rare diseases, featuring insights from IORD CEO & President Prof. Ramaiah Muthyala Rare diseases are a pressing global health issue, with an estimated 7,000 to 8,000 rare diseases identified worldwide. These conditions affect a relatively small percentage of the population, making awareness, diagnosis, and treatment especially challenging.Read more

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 | IORD in News, IORD Updates, Rare Disease News | 0 comment | 2 November, 2024 | 0

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 Meeting held on October 21-22, 2024, in Barcelona, Spain. Barcelona, Spain – There is a need for continued collaboration and innovation to create a more equitable healthcareRead more

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 | IORD Updates, Rare Disease News | 0 comment | 19 September, 2024 | 0

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 Dystrophy. The insights shared during this discussion highlight the importance of awareness, early diagnosis, and access to resources for families navigating the challenges of MuscularRead more

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

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 | IORD in News, IORD Updates, News, Rare Disease News | 0 comment | 15 June, 2024 | 0

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,” is set to convene at the esteemed “Aula Magna” in the Faculty of Pharmacy and Biochemistry at the University of Buenos Aires (UBA), located at JunínRead more

WHO Grants ‘Official Relations’ Status to Rare Diseases International. It Will Help Enhance Collaboration With WHO to Enhance Healthcare Access for Rare Disease Community

Rare Diseases International Gains WHO Recognition, Granted “Official Relations” Status

By IORD | IORD in News, IORD Updates, News, Rare Disease News | 0 comment | 5 June, 2024 | 0

Indian Organization for Rare Diseases (IORD) is a full member of Rare Disease International (RDI) Geneva: In a notable achievement for the global rare disease fraternity, Rare Diseases International (RDI) has been granted “official relations” status by the World Health Organization (WHO) during the 155th session of the WHO Executive Board in Geneva, held onRead more

While India’s pharmaceutical industry is predicted to reach $100 billion by 2025, access to rare disease drugs is still a major problem in India, where local and imported orphan medicine prices fluctuate significantly with huge cost differences.

Made in India, Missing in India: The Orphan Drug Access Challenge

By IORD | Events, IORD in News, IORD Updates, Rare Disease News | 0 comment | 18 May, 2024 | 1

By 2025, Indian pharmaceutical industry in the nation is predicted to reach $100 billion. Boston, USA: Even though India produces all 450 of the world’s orphan medications (APIs), the majority of these medications are not readily available and are not reasonably priced there, said Indian Organization for Rare Diseases (IORD) CEO & President Prof RamaiahRead 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