The following is an excerpt from a three-part interview series featuring IORD CEO & President Prof. Ramaiah Muthyala. In this segment, he speaks with Health Issues India about the pressing need to raise rare disease awareness across India and offers key recommendations to improve early diagnosis, train frontline healthcare workers, and integrate rare diseases intoRead more
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The following is an excerpt from a three-part interview series featuring IORD CEO & President Prof. Ramaiah Muthyala. In the first part, he speaks to Health Issues India on rare disease care in India and highlights NPRD’s progress, persistent gaps in diagnosis, treatment, and the need for disease-specific approaches. Read more at healthissuesindia.com RareRead 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. This event marks a significant step towards addressing the challenges posed by rareRead more
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 and Challenges’ addressed by Prof. Ramaiah Muthyala at the Federation of Asian Biotech Associations (FABA)-US Chapter. Hyderabad: Speaking at a webinar onRead more
A webinar organized by the Federation of Asian Biotech Associations-US chapter highlighted the socio-economic and emotional impact on the 70 million Indians affected by rare diseases (RDs).
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.
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