Grid 4 Columns

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

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),
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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

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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 (
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The following article is reproduced from an editorial article by Kamal Pratap Singh published in Biotech Express on page 8 in November 2024 based on the webinar ‘The Global Burden of Rare Diseases: Issues and Challenges’ addressed by Prof. Ramaiah Muthyala at the Federation of Asian Biotech Associations (FABA)-US Chapter.

Prof Ramaiah Muthyala Updates on Rare Diseases in India

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The following is reproduced from an editorial article by Kamal Pratap Singh published in Biotech Express on page 8 in November 2024 based on the webinar ‘The Global Burden of Rare Diseases: Issues and
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The Global Burden of Rare Diseases: Issues and Challenges' was addressed by Hyderabad-based Indian Organization for Rare Diseases founder Prof. Ramaiah Muthyala.

Affordability of drugs for rare diseases a challenge

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The following article is reproduced from a news article by Amrita Didyala, published in Times of India on Wednesday, December 18, 2024, based on the webinar ‘The Global Burden of Rare Diseases: Issues
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A webinar organised by the Federation of Asian Biotech Associations-US chapter highlighted the socio-economic and emotional toll on the 70 million Indians affected by rare diseases (RDs)

Webinar Highlights Challenges Presented by Rare Diseases

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The following article is reproduced from a news report by Shrimanshi Kaushik, published in Deccan Chronicle on Wednesday, December 18, 2024, based on the webinar ‘The Global Burden of Rare Diseases: I
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The following excerpt is from a news article by Nandita Vijayasimha, published in Pharmabiz on Saturday, December 21, 2024, based on the webinar ‘The Global Burden of Rare Diseases: Issues and Challenges’ addressed by Prof. Ramaiah Muthyala at the Federation of Asian Biotech Associations (FABA)-US Chapter.

India should focus on critical health crisis posed by rare diseases: Prof. Ramaiah Muthyala

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The following is reproduced from a news article by Nandita Vijayasimha, published in Pharmabiz on Saturday, December 21, 2024, based on the webinar ‘The Global Burden of Rare Diseases: Issues and Chal
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The Delhi High Court has extended the tenure of the National Rare Disease Committee (NRDC) for 5 years, empowering it with a broader mandate to strengthen rare disease management in India.

NRDC Extended for Five Years to Boost Rare Disease Initiatives

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Delhi: In a significant decision, the Delhi High Court has extended the tenure of the National Rare Disease Committee (NRDC) and broadened its mandate. This move aims to establish a more coordinated,
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In a landmark ruling, the Delhi High Court ordered the creation of a ₹974 crore National Fund for Rare Diseases for 2024–26, emphasizing patient-centric policies, expanded treatment access, and funding reforms.

National Fund for Rare Diseases Announced: ₹974 Crore Allocated for 2024–26

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Delhi: In a set of pathbreaking directions that is set to help the rare disease fraternity in India, the Delhi High Court has directed the Union of India to establish the National Fund for Rare Diseas
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The Delhi High Court has introduced a landmark Standard Protocol to streamline rare disease management, ensuring continuous availability of therapies, local drug manufacturing, and time-bound treatment delivery.

Delhi High Court Sets Up Standard Protocol for Rare Disease Treatment

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Delhi: In a landmark judgment, the Delhi High Court ordered the setting up of a comprehensive Standard Protocol for managing rare disease cases at Centers of Excellence (CoEs). The protocol mandates c
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IORD & Rare Diseases in India: Impact, Initiatives & Challenges

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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

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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

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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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Grid 4 Columns

IORD-RJS Launches 20-Day Rare Disease Awareness Campaign

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

Prof Ramaiah Muthyala Updates on Rare Diseases in India

Affordability of drugs for rare diseases a challenge

Webinar Highlights Challenges Presented by Rare Diseases

India should focus on critical health crisis posed by rare diseases: Prof. Ramaiah Muthyala

NRDC Extended for Five Years to Boost Rare Disease Initiatives

National Fund for Rare Diseases Announced: ₹974 Crore Allocated for 2024–26

Delhi High Court Sets Up Standard Protocol for Rare Disease Treatment

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

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

IORD Champions Rare Disease Advocacy at RDI Meeting in Barcelona

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