Novo Nordisk India partners with ORDI for Racefor7 Racefor7 promotes awareness, encourages early diagnosis, and calls for improved access to rare disease care across the country News By EH News Bureau On Feb 26, 2026 Novo Nordisk India and the Organization for Rare..
Read More
Karnataka Health Minister assures State Rare Diseases Policy soon February 23, 2026 | Monday | News Karnataka Health Minister Dinesh Gundu Rao flags off Racefor7 11th edition The Organization for Rare Diseases India (ORDI), a national patient advocacy organization committed..
Read More
The duty exemption addresses import costs but leaves the fundamental affordability challenge unresolved. Families continue to face monthly expenses of tens of thousands of rupees and annual costs running into crores. Sumit Jha Published Feb 02, 2026 | 2:32 PM..
Read More
Cancer imposes catastrophic health expenditure in India, with medicines constituting over 60% of out-of-pocket expenditure. Research shows wide price variations, limited cost containment. Sneha Richhariya 01 February, 2026 08:43 pm IST Representational image | Commons New Delhi: Finance Minister Nirmala Sitharaman..
Read More
Duty cuts ease imports, rare disease costs remain crushing nationwide Patient groups say customs exemptions help little without sustained government funding support for rare disease treatment across the country The Union Budget 2026 announced targeted relief for cancer..
Read More
The silent epidemic. ‘Rare diseases aren’t rare, they’re orphaned’ Despite India’s national policy on rare disease treatments, access is marred by delays and exorbitant costs By J Mangaiyarkarasi Updated – January 26, 2026 at 08:37 PM. Ahead of Budget 2026, patient..
Read More
My article Rare Diseases In India: Why Early Diagnosis Is Still The Biggest Missing Link Prasanna Shirol Jan 24, 2026 For millions of Indians with rare diseases, the real crisis isn’t treatment, it’s the years lost before a correct diagnosis..
Read More
( My views and statement in this article) Thirteen-year-old Rohan (name changed), a little shy and very happy, envelops his mother in a spontaneous bear hug as three of his teachers and therapists compliment and tease him playfully. We are at..
Read More
Centre for DNA Fingerprinting and Diagnostics (CDFD) had organised a LSD Symposium. This was part of their ICMR project on research. I spoke about why LSD research is required in India...
Read More
Received the Invitation to “The New Frontier: Innovation, Regulation, and Access in Cell & Gene Therapy”, this is organized by DBT and BIRAC an industry-academia meet on to advance these recommendations, support collaborative dialogue, address regulatory challenges, and engage all..
Read More
This is the article published in Gujrat and one of the doctors sent us. ..
Read More
Attended a “Global Diversity and Clinical Trials Expert Panel Meeting” as a Expert Advisor representing India. This was Organized by Boehringer Ingelheim in Lisbon on 22nd to 24th In Lisbon, Portugal. This was my second Physical meeting. It was informative,..
Read More
I had the opportunity to meet, interact with Mr. Frédéric Oudéa, Global Chairman of the Board of Directors-Sanofi, along with other Board members ay Hyderabad on 10th Sept 2025. Mr Parameshwaran Dr Nishant were present from the India Team I spoke..
Read More
September 1, 2025, 8:35:12 AM IST (Published) CNBC-TV18 Why India’s rare disease crisis demands a collaborative response Given that half of all rare diseases manifest at birth, the argument for a robust, nationwide newborn screening program is undeniable, notes Prasanna..
Read More
HDSI ( Huntington Disease Society India) organized 2nd International conference on 23rd and 24th Aug 2025 at NIMHANS Convention Hall in Bengaluru. ORDI was one of the Co organizer along with Department of Health and Family Welfare Karnataka, Movement Disorder..
Read More
It was my hour to be a speaker at National Rare Diseases Conference 2025 Organized by FICCI (Federation of Indian Chambers of Commerce and Industry) in collaboration with NITIAayog and IMPF ( Indian Medical Parliamentarian Forum) highlighting innovation, access, indigenous..
Read More
I was invited as a Panelist on Day 2 of R.I.D.E. 2025 organised by MIT- WPU ( World Peace University) Pune Theme of the panel discission was : Innovation: A need in Every Vertical Other panelist were Mr. anjan biswas..
Read More
ACTRaD 2025, a National Conference focused on advancing Clinical Trials in Rare Diseases was conducted on 25th and 26th July at INSA ( Indian National Science Academy, New Delhi. This was Co Organised by: TIGS (Tata Institute for Genetics and..
Read More
Wheelchair accessibility in India: The struggles of those with rare diseases Individuals affected by rare diseases and their families face challenges that often overlook the need for tailor-made houses and wheelchair access in public spaces across India Written by Sunitha..
Read More
It was a moment of Pride and Hope to visit this new facility at CSIR ( Council of Scientific & Industrial Research) – IGIB ( Institute of Genomics and Integrative Biology). They are being set up for working on a..
Read More