Happy to speak at #concured conference for unknown and #rare #eyediseases conducted by Dr. Shroff's Charity Eye Hospital NIH #cegc #cured at #NewDelhi . It is encouraging to see activities from different specialities after #rare disease #policy in #bharat . ORDIndia

Thank you Barkha Kumari Deccan Herald for this beautifully curated story ORDIndia

India stands with over 7 crore patients battling rare diseases, yet 95% face incurable challenges!!

Meet Prasanna Shirol , co-founder of ORDIndia , as he sheds light on the topic for the nation to know

read his full interview 👇🏽
🔗villagesquare.in/rare-diseases-…

#rarediseaseday …

When will it be for Kerala and Karnataka ?
Trivia - some states have two AIIMS already ?

A big thank you for all those who participated in the #Racefor7 awareness run and made it a successful one. It was indeed a memorable event.🏃‍♀️🏃

Lets pledge to create more awareness on #RareDiseases !

#RareDiseaseDay #Bengaluru

ORDIndia Rakesh K Mishra Prasanna Shirol

Are you participating at the annual #Racefor7 event?

An awareness run about #rarediseases and to empower patients and their families with access to national and international resources, organised by ORDIndia

25 Feb '24

racefor7.com/about/

Rakesh K Mishra Prasanna Shirol

Where is the #Justiceforall why exclusive Policy. Disease do not affect selectively.

Rs 330 crores have been earmarked by Cong Karnataka state government in its budget
for development of wakf property, for construction of Haj Bhavan in Mangaluru and Christian community development.

This is a state where the government pockets on an average Rs 450 crores worth…

Congratulations ORDIndia

MOHFW gave ₹107 CR in 3 years to 11 Govt. 🏥, for Rx of 2,420 regd. #RareDisease pts under NRDP, 2021.
JUST 53 CR (48.7%) utilized in 3 yrs!
Top 5 🏥 where MAX ₹ UNUTILIZED:
1. NIMS, Hyderabad : 95.5%
2. SGPGI, Lucknow : 82%
3. AIIMS, Jodhpur : 70%
4. AIIMS, New Delhi : 65%
✍️…

Happy to conduct 9th edition. One of the world's largest multicity event to raise awareness about #RareDisease in #Bharat please join and support #patients #caregivers #Parents and draw the attention of #policymakers to understand our challanges.

Our Director Prasanna Shirol is Panelist for a session on Patient's perspective on #clinicaltrials at the 17th Annual #conference of #ISCR in #Hyderabad Patient centricity is the future of Clinical trials #rarediseaseawareness #policymakers #racefor7 #icareforrare #orphandrugs

In every aspect of Indian life, 'Ram' holds a unique presence:
🌟 In sorrow: 'Oh Ram'
🌟 In pain: 'Arre Ram'
🌟 In misfortune: 'Hay Ram'
🌟 In greeting: 'Ram Ram'
🌟 In oath: 'Ram kasam'
🌟 In uncertainty: 'Ram bharose’
🌟 For good governance: 'Ram Rajya’
🌟 In death: 'Ram naam…

We don't know how many lives we loose in this world in similar fashion. Sometime it is scary with #hospitals #ICU

Inauguration of #ISHG2024 #Ahmedabad invocation songs 🎵

At #ISHG2024 in #Ahmedabad with Dr Alok Bhatthacarya from World without GNE Myopathy and with Dr Vasant from Tata Institute for Genetics and Society, India

AT #ISHG2024 #Ahmedabad

Yesterday had a long talk & walk with Sridhar Sivasubbu on the #riverfront #Ahmedabad . Discussed ways in which #raredisease problems need to be addressed. Learned different way to look at.

Special initiative for #specialchildren started by my friend. Creating memories is imp for all #patients and #families This is much needed in #Bharat for families to go out and enjoy. Support needed from all stakeholders #inclusive #rarediseases #wheelchair #SocialJustice

❗1 in 5 Super-Specialty Medical (DM, MCh & DNB) seats across 🇮🇳 VACANT (V),after 2 rounds of NEET-SS counselling: DGHS data
❗Total DM, MCh seats-3,608/ V-528
Max -Ped Surgery (114) & CTVS (105)

❗Total DNB seats -2,201/V-615
Max- Critical Care (223) & Cardio (139)

👉Top 2…