Designing a collaborative care system beyond caretakers Prasanna Shirol—India Feb 27, 2025 4 min read Rare disease patient management must include long-term support for patients and peace of mind for families, ensuring that care continues seamlessly even when parents..
Read MoreThe DICG-NATCO round table meeting held during the World Congress of Nephrology, 2025 explored hitherto less explored complexities of organ transplantation in India, focusing on access, justice, and donor autonomy. It drew insights from successful advocacy efforts in disability rights,..
Read More
This is about :ORDI has written a letter to Prime Minister Mr Modijee and Health Minister Mr Naddajee urging to continue Enzyme Replacement Therapy beyond 50 Laksh fixed under National Policy for Rare Diseases. ..
Read MoreBeyond tax exemptions: Rare disease patients await comprehensive policy support While the Union Budget’s customs duty exemption for 36 life-saving drugs offers some relief, patients and advocacy groups say deeper challenges in rare disease treatment remain unaddressed, from exorbitant costs..
Read More
Attended APARDO ( Asia Pacific Association for Rare Diseases Meeting in Manila – Philippines from 23rd to 24 the Nov 24. ..
Read More
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..
Read More
It was my privilege to be among 60 members from 6 continents to attend and represent India at COLLABORATE initiative at Prague Czech Republic The first-of-its-kind multistakeholder initiative aimed to understand the challenges faced by people with #adult-onset rarediseases and..
Read MoreIt was my privilage to be a Speaker at the 6th CII Pharma and Life Sciences in New Delhi..
Read More
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 MorePress Coverage about the Gene Therapy and Precession Medicine Conference and I was one of the Speaker...
Read More
Faculty at Gene Therapy & Precision Medicine Conference- Bengaluru on 21st and 22nd September 2024 organized by GROW Research Laboratory -Narayana Nethralaya Bengaluru, Centre for Genetics & Gene Therapy and Narayana Nethralaya Foundation. The Conference was Inaugurated by Honourable Chief Justice of..
Read More
I was Speaker at Patient Centric Summit ( GPP Charter ) – Dubai, Organised by Boehringer Ingelheim. Spoke on Framework to Support POs (Patient Organizations) and HCPs ( Health Care Professionals) in GPP ( Generalized Pustular Psoriasis) Management. A Rare..
Read More
My statement on the occasion: “The burden of care remains not just for a day. With genetic disease they think about how to manage month on month for years. Some loose hope in the process, there are suicide attempts, divorces,..
Read More
We at ORDI inaugurated ARK (Alliance for Rare KIDneys) to Support Patients Suffering from Rare Kidney Diseases on 13th September 2024, Rare kidney diseases include more than 150 rare disorders, generally characterized by low prevalence and often with multifactorial causation;..
Read More
Attended Global Clinical Trial Experts Panel Meeting on Diversity in Clinical Trials at Amsterdam organised by Boehringer Ingelheim from 2nd to 4th September 24...
Read More
Ahobilam is a town in Nandyal District of Andhra Pradesh. It is surrounded by beautiful hills of the Eastern Ghats. It is the centre of worship of Lord Narasimha , The lion headed avatar of Vishnu to whom the 9 temples are dedicated...
Read More
I was a speaker at the webinar organised by Dr Shroff’s Charity Eye Hospital, Delhi. ..
Read More
