Revathi B, an engineering student in Bengaluru, hopes to turn 19 this April — if she lives to see it. Diagnosed with the most severe form of Gaucher disease, a rare genetic disorder that often claims lives in early childhood,..
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কলকাতায় বিরল রোগ স্ক্রিনিংয়ে ঐতিহাসিক উদ্যোগ! ১১ হাজার ৩০০ পরিবারে পরীক্ষা, ১১টি রোগ নির্ণয় কলকাতা পুরসভা, ORDI ও RWBA-র উদ্যোগে প্রথম সরকারি বিরল রোগ স্ক্রিনিং কর্মসূচিতে ১১,৩০০ পরিবার পরীক্ষা, ১১টি নিশ্চিত রোগ নির্ণয় এবং সুস্থ শিশুজন্মের নজির। প্রেস ক্লাবে সচেতনতা..
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Dr. Sunil Dogra at 5th National Conference of HAE Society of India (HAESICON) in Bengaluru on 21st and 22nd Feb 2026 at Sheraton Grand Bengaluru. He is a Professor in the Department of Dermatology, Venereology & Leprology at PGIMER, Chandigarh...
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I Met Dr. (Mrs) Prasanna Menon at HDSI International conference Conference in Bengaluru on 23rd and 24th Aug 2025. She runs Dr. Menon’s Palliative Care in Thane Mumbai and it was heartening to know about the kind of care and..
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I Met Archana Ravada HDSI International conference Conference in Bengaluru on 23rd and 24th Aug 2025. She is a Brave Rare Warrior fighting the battle alone. Her maturity and understanding about the condition and living with HD is an example..
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On 12th May 2025 ORDI conducted “Rare Diseases Awareness” program at LabCorp Office at Bengaluru. This was attended by employees both physical and online. I spoke about how ORDI supports Rare Disease patients and how individual and company can support..
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My self and Mr Madhan had an opportunity to Meet Dr Jan Klatt, Senior Vice President – Head of Development of Unit Neurology & Immunology- Germany Mr Ter Yow Wei , A/Director , Clinical Site Lead, SEA, India and HK..
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For Best of Prague Photos : https://photos.google.com/share/AF1QipOpfEIHLA29hv3AqAGjBKN00jBekmBoGqi-vzsE9XaSkQ_EwrOajFyGxIGffVNRew?key=S2tqcW84UkVObUs1QWJwTnh4al90bUFOWnF6aXpn..
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Met Mr Vinay Sharma, Business Unit Head Astra Zenca along with Mr Madhana Gopal. We discussed Scenario of Rare Disease Market and possible strategies to provide access to Patients in India. Astra Zeneca offers big hope among the industry with..
Read MoreWas part of 1st Reunion meeting after my B Sc in SSKB college Basavakalyan. This is after 35 years..
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Dr. Shroff’s Charity Eye Hospital organized a CURED ( Conference for Unknown and Rare Eye Diseases) conference in Association with NIH, CEGC in India .Habitat Center New Delhi on 7th April 2024. I spoke about ORDI and Rare Disease policy...
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Attended 57th OPPI Annual Day in Mumbai..
Read MoreI was part of this special Award function by Boehringer Ingelheim in Amsterdam and There was a personalized menu based on our choice..
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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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