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Home Search results for "rare disease registry"
In this insightful article published in PharmaClick, Dr. Krishnaji Rao, Secretary of IORD, explains how India is accelerating progress in rare disease policy, early diagnosis, research innovation, and patient support.

India Steps Forward as a Global Leader in Rare Disease Management

By IORD | IORD in News, IORD Updates, News | 0 comment | 29 November, 2025 | 0

(This article is written by Dr. Krishnaji Rao, IORD Secretary, and first appeared in Pharmaclick magazine on pages 67, 68, and 69. The original article can be accessed here) The Indian Organisation for Rare Diseases (IORD) is a pivotal force championing rare disease—conditions that, while individually uncommon, collectively affect millions. Founded in 2005, IORD representsRead more

Rare Disease Awareness in India Dr. Ramaiah Muthyala's Strategic Insights

Advancing Rare Disease Awareness in India: Dr. Ramaiah Muthyala’s Strategic Insights

By IORD | IORD in News, IORD Updates, Rare Disease News | 0 comment | 14 May, 2025 | 0

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

GST Relief on Rare Disease Drugs Import & Food for Special Medical Purposes for Personal Use, Pharma Sector says Not Enough

GST Relief on Rare Disease Drugs Import, Pharma Sector & RD Kin Say Not Enough

By IORD | IORD Updates, News, Rare Disease News | 0 comment | 18 July, 2023 | 0

The GST Council in its 50th meeting on exempted the Integrated Goods and Services Tax (IGST) on medicines and Food for Special Medical Purposes (FSMP) used for personal use & treatment of rare diseases enlisted under the National Policy for Rare Diseases, 2021. The meeting was chaired by Union Finance and Corporate Affairs Minister SmtRead more

IORD launches first ever rare disease counting project in Telangana

IORD Initiates First-of-its-Kind Rare Disease Counting in Telangana

By IORD | IORD in News, IORD Updates, Rare Disease News | 0 comment | 16 November, 2022 | 0

Khammam: In a unique initiative to identify and count rare disease populations as part of a pilot study in Telangana, the Indian Organization for Rare Diseases (IORD) has started sensitization and interactive awareness meets with health workers in the Khammam district of Telangana. The pilot study – supported by Telangana state health commissioner Dr Sweta MohantyRead more

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  • India: Rare Ophthalmic Disorders Take Centrestage at World Rare Disease Day-2026
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IORD

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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Indian Organization For Rare Diseases
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IORD – Indian Organization for Rare Diseases