National rare disease advocacy, 24/7 patients hotline, engage Hospitals, Physicians, Pharma/Biotech/Dx industry, Orphan drugs act for India, Global Alliances
Joined December 2014
- Tweets 2,464
- Following 964
- Followers 1,528
- Likes 2,117
1,118 Photos and videos
Grateful for this powerful gesture of solidarity.A popular leader like you flagging off #racefor7 in Bengaluru sends hope to families fighting silent battles every day.Commitment to launch Karnataka State #RareDiseasePolicy brings renewed faith that change is truly on the horizon
Deeply honored to flag off the ORDI Rare Disease Awareness Run in Bengaluru, a powerful testament to the extraordinary courage, resilience and indomitable spirit of individuals and families living with rare diseases, and a reaffirmation of our commitment to stand beside them with stronger care, early diagnosis, research and hope for a better tomorrow.
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🧠 World Brain Tumor Day – June 8
Today we raise awareness about brain tumors, support research, and stand with patients, survivors, caregivers, and healthcare professionals.
#WorldBrainTumorDay #BrainTumorAwareness #BrainTumor #CancerAwareness #BrainHealth #EarlyDetection
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🧬 As precision medicine continues to transform healthcare, ethical considerations and community awareness play a vital role in ensuring informed decision-making and equitable access to genetic services.
📅 10th June 2026
⏰4:00 PM – 5:00 PM IST
🆔: 874 0733 6825
🔑 8892555000
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Join us this World Health Day for an insightful webinar on “Data, DNA, and Dignity: Rethinking Rare Disease Care in India.”
📅 Date: 08 April 2026
🕓 Time: 04:00 PM – 05:30 PM
🔗 Register now and be part of the conversation: bit.ly/WHD-26
#WorldHealthDay
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🧠 Epilepsy & Mass Screening Camp | ಫಿಟ್ಸ್ ತಪಾಸಣಾ ಶಿಬಿರ
👨⚕️ Neurologists | Pediatricians | Genetic Experts
📅 May 3, 2026 | ⏰ 9AM–2PM
📍 Sri SBS Ayurvedic Medical College, Mundargi
📞 8892555000 | 🌐 ordindia.in
#EpilepsyAwareness #HealthCamp #RareDiseases
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Understanding the latest advancements and real-life challenges in managing xeroderma pigmentosum is crucial for improving patient care, awareness, and long-term outcomes.
#ORDI #RareInfoSeries #XerodermaPigmentosum #RareAwareness #RareCommunity #GeneticDisorders #RareSupport
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A Journey of 52 Weeks Comes to a Meaningful Milestone 💜
We are proud to celebrate the successful completion of the Rare Info Series – 52 Weeks by ORDI.
#RareInfoSeries #ORDIIndia #RareDiseases #AwarenessMatters #HealthcareCommunity #MedicalAwareness #52WeeksJourney
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ORDIndia retweeted
Mar 12
Why do rare diseases happen? 🧬
Dr. Monika Pahuja, Scientist, ICMR , explains: youtu.be/nh3zOKoQBCs
#ICMR @DeptHealthRes @MoHFW_INDIA
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ORDIndia retweeted
I was honored to attend and deliver my talk on rare disorders on Rare Disease Day at RV nursing college and Physiotherapy centre in #Bengaluru. It was a great interaction with the curious crowd.
@ORDIndia
#RareDiseaseDay
#Medtwitter
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ORDIndia retweeted
Feb 27
HEALTH: @novonordisk & #ORDI partnered for the 11th edition of #Racefor7 run in Bangalore. From #patients and caregivers to clinicians, the event brought together diverse voices in a collective push for stronger #healthcare.
More details: biovoicenews.com/novo-nordis……
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The Government of Karnataka is set to announce the State Rare Diseases Policy — a major step toward better care and access.
Grateful to Dinesh Gundu Rao for his commitment to strengthening support for the rare disease community.
#RareDiseases #Karnataka #ORDI
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Join us in making every step count at the Race for 7 – 11th Edition, organized by ORDI (Organization for Rare Diseases India). 🏃♂️🏃♀️
Run for Rare. Run for Lasting Care.
🌐 ordindia.in
📞 91 8892 555 000
#RaceFor7 #RunForRare #ORDI #RareDiseaseAwareness
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We are proud to be supported by AstraZeneca, standing with us in our mission to advance care, awareness
🗓 Date: Sunday, 22.02.2026
⏰ Time: 06:00 AM
Register now: registration.racefor7.com
📞 91 9343511011
📧 madhan@ordindia.in#RaceFor7 #RunForRare #ORDIndia
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We are proud to be supported by Laurus Labs, a company driven by “Chemistry for Better Living”, standing with us in our mission
🗓 Date: Sunday, 22.02.2026
⏰ Time: 06:00 AM
🔗 Register now: registration.racefor7.com
📞 91 9343511011
📧 madhan@ordindia.in
#RaceFor7
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We are proud to have MedGenome as our Diagnostic Partner, supporting the cause with their commitment
🗓 Date: Sunday, 22.02.2026
⏰ Time: 06:00 AM
🔗 Register now: registration.racefor7.com
📞 91 9343511011
📧 madhan@ordindia.in
#RaceFor7 #RunForRare #ORDIndia
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We are proud to have Novo Nordisk as our Gold Sponsor, supporting this meaningful cause and standing with the rare disease community. 🤝
🗓 Date: Sunday, 22.02.2026
⏰ Time: 06:00 AM
🔗 Register now: registration.racefor7.com
📞 91 9343511011
📧 madhan@ordindia.in
#RaceFor7
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Race For 7 – Run for Rare, Run for Lasting Care!
We are proud to have Sanofi as our Platinum Sponsor, standing strong in support of this meaningful cause.
🗓 Date: Sunday, 22.02.2026
⏰ Time: 06:00 AM
🔗 Register now: registration.racefor7.com
📞 91 9343511011
#RaceFor7
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ORDI proudly celebrates a moment of immense pride and inspiration. 🌟
We extend our heartfelt congratulations to Dr. Thangaraj on being conferred the Padma Shri.
#PadmaShri #DrThangaraj #ORDI #HumanGenetics #RareDiseases #PrideOfIndia #ExcellenceInScience
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