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Home Archive by category "Events"
Kakatiya Medical College students present their groundbreaking research on rare diseases at the Annual UG Medical Research Conference held at AFMC, Pune, on May 5, 2025.

Kakatiya Medical College Shines at AFMC Annual UG Medical Research Conference in Pune

By IORD | Events, IORD in News, IORD Updates, Rare Disease News | 0 comment | 13 May, 2025 | 7

Kakatiya Medical College (KMC), Warangal, made a proud mark at the Annual UG Medical Research Conference held on May 5, 2025, at the prestigious Armed Forces Medical College (AFMC) -Illuminati Conference – in Pune. A seven-member team of final-year MBBS students presented their in-depth research titled “Dual Perspectives on Rare Diseases: An Analysis of DiagnosticRead more

Prof. Ramaiah Muthyala (left, sitting) discussing innovative solutions for rare diseases at the 2025 World Orphan Drug Congress in Boston. With a focus on policy reforms and access to affordable medications, the panel addressed the urgent need for systemic change in rare disease care globally

Prof. Ramaiah Muthyala Calls for Policy Reforms at World Orphan Drug Congress-2025

By IORD | Events, IORD Updates, Rare Disease News | 0 comment | 4 May, 2025 | 0

Prof. Ramaiah Muthyala discussed challenges and solutions for rare disease access at the 2025 World Orphan Drug Congress in Boston. He highlighted the global economic burden of rare diseases and the unique barriers in low- and middle-income countries. Efforts in India to reduce orphan drug costs, including the availability of Hydroxyurea for sickle cell diseaseRead more

Prof. Ramaiah Muthyala, CEO & President of IORD, inaugurates the World Rare Disease Day 2025 conference in Vijayawada by lighting the ceremonial lamp in the presence of dignitaries.

World Rare Disease Day 2025: IORD Advocates for Policy & Awareness

By IORD | Events, IORD Updates, Rare Disease News | 0 comment | 19 March, 2025 | 0

Vijayawada: The Indian Organization for Rare Diseases (IORD), a non-profit advocacy body, convened a critical conference titled “RAISE THE AWARENESS – RARE DISEASES: Advocate Public Policy, Promote Diagnosis, Treatment & Social Services” at Fortune Murali Park, Vijayawada on February 28, to mark World Rare Disease Day 2025.   The event, attended by healthcare experts, policymakers,Read more

This is a transcribed speech of Indian Organisation for Rare Diseases (IORD) President and CEO, Prof. Ramaiah Muthyala delivered at the World Rare Disease Day 2025 conference in Vijayawada, organized by the IORD.

Prof Ramaiah Muthyala: A Call for Policy Change and Rare Disease Healthcare in Andhra Pradesh

By IORD | Events, IORD Updates, Rare Disease News | 0 comment | 11 March, 2025 | 0

This is a transcribed speech of Indian Organisation for Rare Diseases (IORD) President and CEO, Prof. Ramaiah Muthyala delivered at the World Rare Disease Day 2025 conference in Vijayawada, organized by the IORD. Check the full video here.   Today, while India celebrates National Science Day, the world celebrates Rare Diseases Day.  Both are important,Read more

The Indian Organization for Rare Diseases (IORD) and the Ram-Janaki Institute Positive Broadcasting House (RJS PBH) have initiated a 20-day awareness campaign to highlight the challenges faced by individuals with rare diseases. The campaign, inaugurated by Professor (Dr.) Ramayya Muthyala, President and CEO of IORD, aims to raise awareness ahead of World Rare Disease Day on February 28, 2025.

IORD-RJS Launches 20-Day Rare Disease Awareness Campaign

By IORD | Events, IORD Updates, Rare Disease News | 0 comment | 9 February, 2025 | 0

New Delhi: In the run up to the World Rare Disease Day 2025 on 28 February, a 20-day awareness campaign for rare diseases was launched by the Ram-Janki Institute Positive Broadcasting House (RJS PBH), led by Founder and National Coordinator Uday Kumar Manna. The event – starting with a webinar on “Urgent need for aRead more

A webinar titled on the Urgent Need for a Unified Approach to Tackle Rare Diseases in India is being organized jointly by RJS PBH - RJS Positive Media and the Indian Organisation for Rare Diseases (IORD) on February 9 at 11.00 AM.

Join Expert-Led RJS PBH Webinar on Rare Diseases on 9th Feb

By IORD | Events, IORD Updates | 0 comment | 5 February, 2025 | 0

A webinar titled on the “Urgent Need for a Unified Approach to Tackle Rare Diseases in India” is being organized jointly by RJS PBH – RJS Positive Media and the Indian Organisation for Rare Diseases (IORD) on February 9 at 11.00 AM. This event marks a significant step towards addressing the challenges posed by rareRead more

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 (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

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

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