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ORDI calls on Karnataka political parties to include rare disease support in the election manifesto

Ahead of the Assembly elections scheduled for May 10, 2023, the Organisation of Rare Diseases of India (ORDI) has called upon the political parties in Karnataka to include support for...

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Novartis eyes rare disease market in India, runs 17 clinical programs

In 2022, Novartis invested around $10 billion in overall research and development (R&D) and has already secured 23 approvals in the United States, European Union, China and Japan for new...

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Rare Disease Policy: The Need Of The Hour

Globally as well as in India, rare or orphan diseases as they are also known, pose a significant threat not just to the public health system but also to the...

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Press & Media

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Amicus (FOLD) Gets Pompe Disease Treatment Approval in Europe

Amicus FOLD announced that the European Commission approved cipaglucosidase alfa, commercialized under the brand name Pombiliti, for treating late-onset Pompe disease (LOPD) in adults. Cipaglucosidase alfa is a long-term enzyme replacement...

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Govt decision to remove tax on drugs & food to treat rare diseases could benefit 70-90 million Indians

New Delhi: The government has exempted all food and drugs imported for the treatment of all rare diseases from basic customs duty, a move that could potentially benefit 70-90 million...

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ORDI News Letter Dec 2022

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ORDI News letter Nov 2022

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ORDI News letter Oct 2022

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Syndromes Without A Name (SWAN) Facilities For Rare Diseases: What Is SWAN? Is There A SWAN Facility In India?

Certain genetic conditions can cause symptoms in children that can’t yet be diagnosed, called Syndromes without a Name (SWAN). It is a term doctors sometimes use when children experience symptoms...

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Upcoming Events

Our Executive Director Mr. Prasanna Shirol was a part of First Ever summit dedicated to advancing equitable care for rare diseases in older adults. The meeting was attended from 25 countries across Canada, Latin America, Europe, and Asia, representing patient and caregiver communities, patient advocates, healthcare professionals, and healthcare policy experts. This is a short video highlighting the impact of the initiative to date, in the words of the COLLABORATE Community.

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