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In a historic gathering at the 78th UN General Assembly Summit in New York on September 21, 2023, Mr. Ramaiah Muthyala, President and CEO of IORD, actively participated in a prestigious Side-Event dedicated to the UN High-Level Meeting on Universal Health Coverage for Rare Diseases.
The event, titled “Universal Health Coverage (UHC) a Reality for People Living with Rare Diseases,” was meticulously organized by Rare Disease International (RDI) in collaboration with the Permanent Mission of Spain and Sweden to the United Nations in New York, the Ministry of Public Health – Qatar, EURORDIS, Ågrenska, and the NGO Committee for Rare Diseases, in conjunction with the UN Member States.
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IORD 2023 Round Up
The year 2023 had been notable in terms of advocacy achievements for Indian Organization for Rare Diseases. From spearheading global awareness for rare diseases at the UN High-Level Meeting, IORD led by its CEO & President Prof Muthyala led impactful advocacy on Indian pharmaceutical companies, successfully reducing costs of medications for rare diseases besides influencing the New Medical Devices Policy. The year also saw successful hosting of Bikeathon and Walkathon for World Rare Disease Day-2023.
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In a poignant reflection on the struggles faced by rare disease patients in India, Prof Ramaiah Muthyala, CEO & President of IORD, underscores the urgent need for an Office of Orphan Products in this interview to pharma portal Pharmaclick.co.in
The article serves as a call to action, advocating for the establishment of a dedicated Office of Orphan Products to address the unique challenges faced by individuals battling rare diseases in India.
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In a groundbreaking development, Indian pharmaceutical companies have not only successfully developed medications for rare conditions such as Tyrosinemia Type 1, Gaucher’s Disease, Wilson’s Disease, and Dravet-Lennox Gastaut Syndrome but have also significantly reduced the associated treatment costs.
Anticipated to be available in the market by early 2024, these four medications are expected to be more affordable than their imported counterparts.
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This policy aims to promote the growth of the medical devices sector in India and achieve a market size of $50 billion in the next five years, up from the current $11 billion. The policy gives special importance to rare diseases, which are clearly mentioned in the new approved medical devices policy in section 41 (4) of the New Drugs, Medical Devices, and Cosmetics Bill. It states that the Central Licensing Authority may, in the public interest, abbreviate, defer, or waive pre-clinical and clinical data requirements for the approval of new drugs related to life-threatening or serious diseases, rare diseases, or diseases of special relevance to the country.
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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).
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