In a first, Indian Organization for Rare Diseases has initiated setting up of a Patient Support Group for Congenital Ichthyosis with all key stakeholders – patients, caregivers & patients’ kin. How does Congenital Ichthyosis impact a patient? It is a rare genetic skin disease; wherein affected patients present with an abnormal skin barrier leading toRead more
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State Senate Leaders Join Community Campaign Celebrating Indian-American Contributions Minnesota, August 15, 2021: In a remarkable move, the Minnesota State House and Senate have come together to introduce bipartisan legislation that officially marks August 15 as India Day. This initiative acknowledges the vital contributions of Indian Americans in the state and offers a platform toRead more
Being compassionate to the needs of rare disease patients has been a pet concern for late Dr Nyapati Srinivasa Rao, 61, in his long association with the Indian Organisation for Rare Diseases (IORD) as a managing committee (MC) member. The humble and always gentle doctor had his feet deeply grounded on research in alternative medicineRead 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
The Union Health & Family Welfare Ministry has officially approved the “National Policy for Rare Diseases 2021” on 30th March 2021. This development comes in the wake of the Delhi High court pulling up the union health ministry and setting a deadline of 30th March 2021 to notify the National Health Policy for Rare DiseasesRead more
The Indian Organization for Rare Diseases (IORD) – a not-for-profit umbrella organisation – hosted a webinar on ‘Rare Diseases: Prevention’ with top global speakers on February 2, 2021. The topic assumes significance, as the estimated rare diseases population in India is about 90 million. Irrespective of what definition we use for rare diseases, more thanRead more
In a reversal of turns, Orphan Drugs manufacturers in India may likely get some much needed relief from the proposed Rs 15,000 crore production linked incentive (PLI) scheme, according to latest news reports. This is a key milestone for the Indian Rare Disease fraternity including Indian Organisation for Rare Disease, an umbrella organization representing interests of allRead more
Source: Vaartha https://www.vaartha.com/telangana/ts-minister-etala-rajender-attends-world-rare-disease-day-event/Read more
Hyderabad: While there are 7,000 recorded rare diseases, it is an uphill task to identify a patient with a rare disease. As per the Indian Organization of Rare Diseases (IORD), it takes an average of 4.8 years for a rare disease patient to be diagnosed, while the maximum time taken could be 20 years asRead more
Hyderabad: The draft of the National Policy for Rare Diseases introduced by the Union government on January 13, this year, was much debated in medical circles due to the suggestion of using crowdfunding as a method of addressing funding issues. Even as the world observes World Rare Disease Day, several patient groups and experts sayRead more