Learn how IORD, led by Dr. Ramaiah Muthyala, influenced national policy, raised awareness & advanced patient advocacy across India
Blog
IORD proposed an MoU with the Andhra Pradesh government to strengthen rare disease care, aiming to enhance policy action, workforce training, and public awareness at the state level.
IORD features Jagruti Sanghvi’s battle with Acute Intermittent Porphyria, highlighting delayed diagnosis and urging nationwide access to Hemin for effective treatment.
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 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
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.
The Union Health Ministry has designated Kerala’s Sree Avittam Thirunal Hospital (SAT) hospital, Government Medical College, Thiruvananthapuram, as a centre of excellence (CoE) for treating rare diseases, making it the 11th such hospital in the country under the Rare Disease Policy 2021. The decision was formally taken by the Rare Disease Cell, Union Ministry of HealthRead more
(This is an abridged version of the presentation delivered by Dr Kameshwar Rao, Executive Director, National Health Authority at the ‘Dr N Srinivasa Rao Memorial Symposium – Rare Diseases & Alternative Treatment’ organized by IORD at Hyderabad on 25th June.) Rare Diseases in Numbers: The World Health Organisation (WHO) estimates that there are an averageRead more