Delhi: Advocacy groups urge the health ministry to streamline rare disease fund usage for optimal patient care. Over the past three years, there's been significant underutilization of funds allocated to rare disease treatment centers of excellence (CoEs). The Union Ministry of Health and Family Welfare disbursed approximately Rs 109 crore to these institutes from FY 2021-22 to 2023-24. However, only Rs 53 crore, or 48.7%, was spent during this period. Despite a National Rare Diseases' Committee (NRDC) appointed by the Delhi High Court, underutilization persists.

Boston, USA: By 2025, the Indian pharmaceutical industry is anticipated to hit the $100 billion mark. Despite this growth projection, accessing rare disease drugs remains a significant challenge in India. According to Indian Organization for Rare Diseases (IORD) CEO & President Prof Ramaiah Muthyala, although India produces all 450 of the world's orphan medications (APIs), these drugs are often unavailable or unaffordable in the country. Prof Muthyala highlighted this issue at the World Orphan Drug Congress-2024 held in Boston, USA.

The World Rare Disease Day-2024 conference organized by the Indian Organization for Rare Diseases (IORD) at IMA Hall, Khammam on March 3, IORD CEO & President Prof Ramaiah Muthyala addressed the attendees, expressing gratitude for their participation. He noted the presence of numerous students and young nursing professionals and highlighted the significance of the event being hosted in Khammam, marking a milestone for the city.

Indian Organization for Rare Diseases (IORD), a not-for-profit national advocacy organization, working for the cause of patients with rare diseases, spanning over the last fifteen years, hosted the awareness Bikeathon and Walkathon, to commemorate the World Rare Disease Day-2023, in association with the Government of Telangana. The event was supported by Nakoda Chemicals Ltd and Jeedimetla Effluent Treatment Limited (JETL).

Buenos Aires: The 16th International Collaboration for Rare Diseases and Orphan Drugs (ICORD Annual Meeting, themed "Incentivizing Science and a Comprehensive Program for Rare Diseases", is set to convene at the University of Buenos Aires (UBA), Argentina on July 24-25, 2024. Online Registration is now open for the meeting.

The meet is being hosted jointly by ICORD, the University of Buenos Aires and Colaboración para las Enfermedades Raras y Drogas Huérfanas (CERyDH, the delegate for ICORD Congress in Argentina), besides a host of institutional partners including Indian Organisation for Rare Diseases.