I was a part of First Ever summit dedicated to advancing equitable care for rare diseases in older adults. The meeting was attended from 25 countries across Canada, Latin America, Europe, and Asia, representing patient and caregiver communities, patient advocates,..
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I was a moderator at ISHG 23 conference on 23rd Jan 2024 in Ahmedabad. The session was on Rare Disease Policy. There was a represtation from all stakeholders like Patients, Industry, Govt and Medical Fraternity. Thanks to Dr Jayesh Seth..
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My daughter Nidhi, India’s First Pompe Patient, Pompe a Rare Genetic condition. She lived on Tracheostomy for 16 years, and was going to School / college with 3 machines. She inspired millions in India for the best living example with..
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I had the Opportunity to speak to the PG students of PGI Chandigarh on Role of ORDI and update on the Rare Disease Policy. Thanks to Dr Inusha Panigrahi for the Opportunity..
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Race for 7 Highlights ❖ Over 180 Participants & Two Patients ❖ 2nd Time in Kochi ❖ Event Flagged off by Mr.Vijay, ACP,Govt of Kerala ❖ Over 400 Participants & 25 patients ❖ 2nd time in Ahmedabad ❖ Event..
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ORDI has inaugurated its first ” Rare Clinic” in Bengaluru on 10th Sept 2022. Dr Meenakshi Bhat – Clinical Geneticist, Centre for Human Genetics Inaugurated the Clinic, Cytiva Team Kavitha Subramaniam and Mr Vineet Inagurated OPD -1 room and also..
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ORDI Conducted Medical Camp On Dated Oct 15th 2022 . Many patients came to the camp and made the Camp successful. There are 7000 Rare Diseases & 70Million Patients are there in India. The objective of this camp was to..
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ORDI & TIGS conduct Rare Genetic Diseases Research Summit on Dated 24th & 25th Nov 2022. REDRESS-2022 is an indigenous and recurrent platform to bring together rare disease researchers and stakeholder work for the Indian Rare Genetic Disease Population ...
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ORDI & HAE India have organized a conference on hereditary angioedema at Connaught Royal Hotel in New Delhi on Dated 18th Dec 2022. The Event is to understand the Burden of HAE and need the hour for taking the HAE..
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This Workshop will l help ‘How to reach patients and careers’. Reaching and engaging patients is a challenge we all face. This workshop will be a great opportunity for patient organizations to come together and share our experiences, successes, challenges, and..
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