The Indian Organisation for Rare Diseases is an institutional partner of ICORD. Buenos Aires: The 16th ICORD Annual Meeting, themed “Incentivizing Science and a Comprehensive Program for Rare Diseases,” is set to convene at the esteemed “Aula Magna” in the Faculty of Pharmacy and Biochemistry at the University of Buenos Aires (UBA), located at JunínRead more
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In Geneva, Rare Diseases International gained “official relations” status with the World Health Organization at its 155th Executive Board session (June 2024).
Rare Disease patient advocacy groups urged the Union Health Ministry to streamline rare disease funding after major underutilisation by Centres of Excellence.
The following is a translated excerpt from the speech made by IORD CEO & President Prof Ramaiah Muthyala at World Rare Disease Day-2024 conference organized by IORD at IMA Hall, Khammam on March 3.
The following is an excerpt from a news story on IORD’s World Rare Disease Day-2024 event published in Telangana Today newspaper.
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.
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
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
The coordination among the 11 Centres of Excellence (CoE) for Rare Diseases and their communication with the Ministry of Health and Family Welfare’s technical committee appears to be significantly inadequate and slow, resulting in hassles for rare disease patients. In a heart-wrenching case, Kanna Rudraksh, a seven-month-old baby suffering from Pompe disease (a rare lysosomalRead more