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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

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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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

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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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IORD to Host Indian Rare Diseases Nurses Network Webinar on 8th August

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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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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

Muscular Dystrophy Complexities: Insights from Experts and Parent Advocacy Group

IORD to Host Indian Rare Diseases Nurses Network Webinar on 8th August

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