In Geneva, Rare Diseases International gained “official relations” status with the World Health Organization at its 155th Executive Board session (June 2024).
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At the World Orphan Drug Congress 2024, Indian Organization for Rare Diseases President Ramaiah Muthyala said India produces APIs for all orphan drugs yet access remains limited and costly.
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 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.