The following excerpt is from an Economic Times news story dated June 24, 2024, discussing the policy hurdles affecting the unavailability of orphan drugs in India, featuring Prof. Ramaiah Muthyala, CEO & President of IORD. India manufactures most of the key active pharmaceutical ingredients (APIs) for over 400 FDA-approved orphan drugs meant to treat rareRead more
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The following excerpt is from a Times of India news story dated June 23, 2024, discussing the unavailability of orphan drugs in India, featuring Prof. Ramaiah Muthyala, CEO & President of IORD. HYDERABAD: Though India manufactures most of the key active pharmaceutical ingredients (APIs) for over 400 FDA-approved orphan drugs for rare diseases, patients backRead more
Delhi: Patients’ advocacy groups have called for the health ministry to implement a mechanism to streamline the utilisation of rare disease funds and ensure as many lives as possible are saved after it emerged gross underutilisation of the funds allocated to centres of excellence (CoEs) for rare disease treatment by in the past three years. The Union Ministry of Health and FamilyRead more
In a boost for rare disease advocacy in India, the Indian government has launched the “National Policy on Research and Development and Innovation in Pharma-MedTech Sector in India” and the “Scheme for Promotion of Research and Innovation in Pharma MedTech Sector (PRIP)”. They focus on fostering research, development, and innovation in the pharmaceutical and medicalRead more
When the Union Cabinet, chaired by Prime Minister Shri Narendra Modi, approved the National Medical Devices Policy, 2023 on April 26, it came as a shot in the arm for rare disease advocacy Indian Organisation for Rare Diseases (IORD). This policy aims to promote the growth of the medical devices sector in India and achieveRead more
The government has waived basic customs duty on drugs and food items prescribed for special medical purposes that are imported for the treatment of rare diseases listed under National Policy for Rare Diseases, 2021.
The youngest Bikeathon participant was Korukonda lyosha, aged only eight years, while the oldest walkathon participant was Subhash Pande, aged 76 years at IORD’s Bikeathon │ Walkathon │ For Rare
Join us to be the voice of 300 million affected people worldwide on World Rare Disease Day-2023. The not-for-profit Indian Organization for Rare Diseases (IORD) is excited to invite you all to an awareness bikeathon and walkathon being organised at the Necklace Road, Hyderabad on 26th February at 6.30 AM on Sunday. Please register forRead more
In what is seen as a step in the right direction, the government has hiked the grant for rare disease treatment from Rs 20 lakh to Rs 50 lakh as per a new office memorandum issued on May 19, 2022 by the Union Ministry of Health & Family Welfare Rare Diseases Cell, New Delhi. InRead more
The Union Health & Family Welfare Ministry has officially approved the “National Policy for Rare Diseases 2021” on 30th March 2021. This development comes in the wake of the Delhi High court pulling up the union health ministry and setting a deadline of 30th March 2021 to notify the National Health Policy for Rare DiseasesRead more