Indian Organization for Rare Diseases (IORD) is a full member of Rare Disease International (RDI) Geneva: In a notable achievement for the global rare disease fraternity, Rare Diseases International (RDI) has been granted “official relations” status by the World Health Organization (WHO) during the 155th session of the WHO Executive Board in Geneva, held onRead more
Blog
Delhi: Patients’ advocacy groups have called for the health ministry to implement a mechanism to streamline the utilisation of rare disease funds and ensure as many lives as possible are saved after it emerged gross underutilisation of the funds allocated to centres of excellence (CoEs) for rare disease treatment by in the past three years. The Union Ministry of Health and FamilyRead 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 following is an excerpt from a news story on IORD’s World Rare Disease Day-2024 event published in Telangana Today newspaper. Khammam: Everyone, regardless of their health condition deserves access to quality healthcare and support, especially those suffering from rare diseases, stated Indian Organisation for Rare Diseases (IORD) president Prof. Ramaiah Muthyala. He addressed a gatheringRead more
Rare Disease Epidemic: 90 million Indians among 300 million globally affected with no cure in sight! Non-profit Indian Organization for Rare Diseases (IORD) Hosts Conference on Rare Disease Awareness with Experts Conference held at IMA Building, Khammam at 9:30 AM on March 3 (Sunday) Khammam: The Indian Organization for Rare Diseases (IORD), a not-for-profit nationalRead 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
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
In a significant development for the entire rare disease community and stakeholders in India, the Delhi High Court has ordered steps for implementing the National Rare Disease Policy, 2021 formulated by the Central Government. Justice Prathiba M Singh, on May 15, directed the formation of a five-member committee to oversee the implementation of the policyRead more