Kakatiya Medical College students presents research at Armed Forces Medical College, exposing diagnostic delays, systemic gaps, and patient struggles in India’s rare disease care.
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IORD marks World Rare Disease Day 2025 with a conference in Vijayawada, advocating policy action, improved diagnosis, treatment access, and greater awareness through expert and stakeholder participation.
IORD and RJS PBH announce an expert-led webinar on rare diseases, focusing on the urgent need for a unified approach to address challenges in India.
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 court direction – given on 22 December 2022 – came following a batch of petitions filed by parents of children suffering from rare diseases such as DMD and hunter syndrome. In a relief for scores of rare disease patients suffering from Duchenne Muscular Dystrophy (DMD) and Mucopolysaccharidosis II or MPS II (Hunter Syndrome) patients,Read more
The 100-day countdown for the World Rare Disease Day-2023 celebration, which falls on February 28, has started with the right earnestness. This year, for creating awareness among the people, short multi-lingual animation videos in several world languages with subtitles were launched for easy understanding for the local population. They include Indian languages like Hindi, Bengali,Read more
Project Y and the Rare Care Centre at Perth, Australia, Children’s Hospital have partnered with the Indian Organisation for Rare Diseases (IORD) to improve rare disease visibility and recognition on a global scale Following successful advocacy from IORD, the health commissioner of India’s state of Telangana approved a ground-breaking proposal to count rare disease patientsRead more
HAEMOPHILIA: An Inherited Condition (This is an abridged version of the presentation delivered by Dr V. Chandrasekhar, MD, FICP, Professor in General Medicine, Kakatiya Medical College & Superintendent, Mahatma Gandhi Memorial Hospital, Warangal, Telangana at the ‘Dr N Srinivasa Rao Memorial Symposium – Rare Diseases & Alternative Treatment’ organized by IORD at Hyderabad on 25thRead more
India has the largest rare disease population in the world, said speakers attending the ‘Dr N Srinivasa Rao Memorial Symposium – Rare Diseases & Alternative Treatment’ at Hyderabad on 25th June, saying it is home to an estimated 25% of the world’s rare disease burden. Every year, it is estimated that some 250 odd newRead 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