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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The following is an excerpt from an address on Alternate Therapies for Rare Diseases delivered by Prof Ramaiah Muthyala, President & CEO, IORD at the National Homeopathic Scientific Seminar-2024 in Hyderabad.
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
New York: In a momentous gathering at the 78th UN General Assembly Summit in New York on September 21, 2023, Mr Ramaiah Muthyala, President and CEO of IORD, took part in the prestigious formal Side-Event dedicated to the UN High-Level Meeting on Universal Health Coverage for Rare Diseases. The event, titled “Universal Health Coverage (UHC)Read 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 this study, a three-member team of researchers led by Pragya Chaube makes a strong case for using RBSK for better management, diagnosis and treatment of rare diseases in India.