Rare diseases, though affecting a small percentage of the population, represent a significant public health challenge in India. The Indian Organisation for Rare Diseases (IORD) has been at the forefront of advocating for policies, raising awareness, and improving treatment access. Rare diseases not only lead to the loss of human productivity but also place aRead more
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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 an excerpt from an address on Alternate Therapies for Rare Diseases delivered by Prof Ramaiah Muthyala, President & CEO, Indian Organization for Rare Diseases at the National Homeopathic Scientific Seminar-2024 in Hyderabad. Background: It was in 2016 when the topic of alternative therapies for rare diseases was first introduced at theRead more
The Union Health Ministry has designated Bhopal AIIMS 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), dated November 6, 2023,Read more
It is with pride that the Indian Organization for Rare Diseases (IORD) observes this welcome development. The entry of Indian pharmaceutical companies into the manufacturing of rare drugs is the result of years of sustained advocacy by IORD and others.
The 100-day countdown for the World Rare Disease Day-2023 celebration, which falls on February 28, has started with the right earnestness. This year, for creating awareness among the people, short multi-lingual animation videos in several world languages with subtitles were launched for easy understanding for the local population. They include Indian languages like Hindi, Bengali,Read more
In what is touted as the first time in India and 4th case in the world, a joint team of doctors from the state government run Osmania General Hospital & Niloufer Hospitals performed a live liver transplantation on an 8-month-old child diagnosed with an extremely rare NISCH syndrome. The marathon surgical procedure by the teamRead more
India has the largest rare disease population in the world, said speakers attending the ‘Dr N Srinivasa Rao Memorial Symposium – Rare Diseases & Alternative Treatment’ at Hyderabad on 25th June, saying it is home to an estimated 25% of the world’s rare disease burden. Every year, it is estimated that some 250 odd newRead more
Nine-month-old Advik Pravin Deshmukh from Maharashtra has been battling Propionic Acidemia – an ultra-rare disorder. It leaves one with a serious and life-threatening inherited metabolic disorder. For Advik Pravin, the diagnosis of this rare metabolic disease can be termed to have happened on time as there is more likelihood of this ultra-rare disease not gettingRead more
If you are a Rare Disease patient in need of a disability certificate, you may no longer need to face the hassle of going around offices as the Department of Empowerment of Persons with Disabilities (DEPwD), Government of India, has now made it mandatory for all physically challenged in India to apply for one onlyRead more