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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

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

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

Introductory speech made by IORD CEO & President Prof Ramaiah Muthyala at World Rare Disease Day-2024 conference organized by IORD at IMA Hall, Khammam on March 3.

World Rare Disease Day-2024: The Journey from Awareness to Action

By IORD | Events, IORD Updates, News, Rare Disease News | 0 comment | 28 March, 2024 | 0

The following is a translated excerpt from the speech made by IORD CEO & President Prof Ramaiah Muthyala at World Rare Disease Day-2024 conference organized by IORD at IMA Hall, Khammam on March 3. Thank you for joining us at this conference. We’re delighted to see many students and young nursing professionals here. Today, I’llRead more

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 | IORD Updates, Rare Disease News | 0 comment | 9 October, 2023 | 0

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 Promotion of Research and Innovation in Pharma MedTech Sector (PRIP)”. They focus on fostering research, development, and innovation in the pharmaceutical and medicalRead more

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 | Rare Disease News | 0 comment | 27 May, 2022 | 2

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 the Union Ministry of Health & Family Welfare Rare Diseases Cell, New Delhi. InRead more

IORD hosts webinar on ‘Rare Diseases Prevention’

By IORD | News | 0 comment | 8 April, 2021 | 0

The Indian Organization for Rare Diseases (IORD) – a not-for-profit umbrella organisation – hosted a webinar on ‘Rare Diseases: Prevention’ with top global speakers on February 2, 2021. The topic assumes significance, as the estimated rare diseases population in India is about 90 million. Irrespective of what definition we use for rare diseases, more thanRead more

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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