Learn how IORD, led by Dr. Ramaiah Muthyala, influenced national policy, raised awareness & advanced patient advocacy across India
Blog
This potential collaboration represents a major milestone for rare disease advocacy in India and could create new benchmarks for state-level policy action, medical workforce training, and public awareness. Vijayawada, Andhra Pradesh: The Indian Organisation for Rare Diseases (IORD) has initiated a strategic collaboration with the Andhra Pradesh government to strengthen the state’s rare disease ecosystem,Read more
Jagruti Rajendra Sanghvi, Co-founder of the Indian Porphyria Association and a rare disease survivor, urges for national access to Hemin, the only effective treatment for Acute Intermittent Porphyria (AIP). Jagruti Rajendra Sanghvi’s diagnosis for Acute Intermittent Porphyria (AIP) came after nearly four years of severe and unexplained abdominal pain, repeated hospitalizations, and extensive misdiagnoses rangingRead more
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. Thank you for joining us at this conference. We’re delighted to see many students and young nursing professionals here. Today, I’llRead 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
This is an excerpt from a research paper titled Expansion of India’s national child healthcare programme, Rashtriya Bal Swasthya Karyakram (RBSK), for rare Disease management: a health policy perspective. This was published in the research journal Orphanet Journal of Rare Diseases. The Rashtriya Bal Swasthya Karyakram (RBSK) is a government program under the National Health Mission (NHM) forRead more
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