In Khammam, Indian Organization for Rare Diseases hosted a World Rare Disease Day 2024 conference with Swarna Bharat Trust, bringing together patients, experts, and stakeholders.
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Registrations are now open for the 12th European Conference on Rare Diseases & Orphan Products (ECRD), scheduled to take place on May 15-16, 2024, at The Square venue in Brussels. Said to be one the largest patient-led events in the rare disease field, the hybrid conference would facilitate collaborative dialogue, learning, and conversation. It servesRead more
The Union Health Ministry has designated Bhopal AIIMS in Madhya Pradesh as a Centre of Excellence (CoE) for treating rare diseases, making it the 12th such hospital in the country under the Rare Disease Policy 2021. The decision was formally taken by the Rare Disease Cell, Union Ministry of Health & Family Welfare (MoHFW), datedRead more
It is with pride that the Indian Organization for Rare Diseases (IORD) observes this welcome development. The entry of Indian pharmaceutical companies into the manufacturing of rare drugs is the result of years of sustained advocacy by IORD and others.
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
(This article is written by Prof Ramaiah Muthyala, IORD CEO & President and first appeared in the portal Pharmaclick.co.in in its blog section. The original article can be accessed here) Recent fundraising efforts by some desperate parents of Pompe disease (Glycogen storage disease type II) to buy expensive medicines and prominent associations raising funds viaRead more
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
In a significant development for the entire rare disease community and stakeholders in India, the Delhi High Court has ordered steps for implementing the National Rare Disease Policy, 2021 formulated by the Central Government. Justice Prathiba M Singh, on May 15, directed the formation of a five-member committee to oversee the implementation of the policyRead 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 following is an excerpt from an interview conducted by Pharma Intelligence with Prof Ramaiah Muthyala, President & CEO of Indian Organization for Rare Diseases (IORD), on central government’s exemption of customs duty on imported drugs and food items recommended for special medical purposes to treat rare diseases. You can read the complete story writtenRead more