KYA HUA TERA WAADA !?
Admiring my beautiful little village Uleytokpo...
and feeling very sad for our nomadic pashmina herders, who are not as lucky & are losing their land to industrial plants and Chinese incursion.
To add insult to injury Amit Shah (Modi Ka Parivar) ji recently said not even an…

Thank you for sharing! RARE Revolution Magazine

We are happy to share the latest Community Letter issued by Roche. You can see more here: sma-europe.eu/news/community…

All together. One goal.
#spinalmuscularatrophy #raredisease #treatment #risdiplam

We r honoured 2 have Mr Vijay Garud, Managing Director, Syniti, n
Mr Srikanth, Director, HR, Syniti join us in commemorating #RareDiseaseDay n supporting #SMArtWarriors
Tku @syniti 4 yr generous donation of medical equipment and motorised wheelchairs 2 SMA patients🙏.

Thank you Syniti for helping #Sma community, #Sma kids are freely moving around in motorized wheelchairs, they will never forget your donation, Thank you again for your kindness

UNDER OBSERVATION AT LEH HOSPITAL
I'm in very good care with best doctors n nurses at Leh's SNM hospital.
One leg ends, new one begins.
From today women's groups start their fast, next it's youth bodies, then monks & nuns, then the elderly n so on...
#SaveLadakh …

Sad reality 💔

#DhruvRathee #SonamWangchuk

20th Day OF MY #CLIMATEFAST
3000 people fasting with me. But still not a word from the government.
Very unusual for a democracy... when 90% of the population have come out to remind the leaders of their promises and 100s have been on fast some for 20 days.
But we're very…

Pic taken while accepting, the 17th Ramnath Goenka Excellence in Journalism Award 2024 under title Prakash Kardaley Memorial Award for Civic Journalism- 2021 at a full packed award function in New Delhi on March 19,2024, for a series of stories on raging pandemic.

Delighted and proud to share that Mid-day is among the winning newsrooms at the Ramnath Goenka Excellence in Journalism Awards 2024. The Award function was held on March 19 2024 @ ITC Maurya, Delhi

We cannot believe that our Congress is already over! 📣😍 1000 participants from all over the globe gathered together between 14 and 16 of March at our 4th Scientific International Congress on Spinal Muscular Atrophy. All together. One goal. Tom Gillingwater #SMACongress2024

Impressive presentation for the Last day of ⁦SMA-Europe⁩ meeting by ⁦frederic.relaix⁩ on satellite cell opathies and the novel concept that SMA may be also a satellite cell opathies ⁦SMA-Europe⁩ ⁦Relaix Lab⁩ ⁦AFM-Téléthon⁩

Exciting updates from Day 2 of #SMACongress2024 in Ghent! New connections were made and groundbreaking research pathways were constructed in SMA. Highlights include insights into cerebellar pathology, developmental defects, and cutting-edge treatments. #AllTogether #OneGoal

Excited to kick off the 4th Scientific International Congress on Spinal Muscular Atrophy in Ghent, Belgium! Today marks the opening of SMAdvocacy day. #SMA #AllTogether #OneGoal #SMA dvocacy #SMA Congress2024 #RareDisease

Beautiful moments and beautiful people attending our 4th Congress Scientific International Congress on Spinal Muscular Atrophy in Ghent, Belgium. 💫

All together. One goal.

#Wearunique #SMACongress2024 #AllTogether #OneGoal #RareDisease #SMAdvocacy ✨

Today, on #RareDiseaseDay , CureSMA India stands with all those affected by rare diseases like #SMA . Together, let's raise awareness, promote research, and support one another in our journey towards a cure. Every voice matters in the fight against rare diseases! #BattleAgainstSMA

Heartfelt gratitude 2 vinod kumar menon & Mid Day 4 coverin d plight of SMA patient We Cure SMA Foundation of India 🇮🇳 r requestin 4 Govt support CMO Maharashtra @OfficeOfDevendra Devendra Fadnavis (Modi Ka Parivar) Eknath Shinde - एकनाथ शिंदे Dr Shrikant Lata Eknath Shinde please donate & helpus save Akriti’s life 🙏🏻

Heartfelt gratitude to Kerala Chief minister Pinarayi Vijayan , Dept. of Health & FW, Govt. of Kerala Veena George for officially announcing the scheme KARE: Kerala united Against RarE diseases. Kerala Government | കേരള സർക്കാർ 's free drug program for SMA and free scoliosis surgeries have saved many lives. Thank you🙏

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%
✍️…

Heartfelt gratitude 2 anonymous donar vinod kumar menon & Mid Day 4 coverin d plight of SMA patient We Cure SMA Foundation of India 🇮🇳 r requestin 4 Govt support CMO Maharashtra @OfficeOfDevendra Devendra Fadnavis (Modi Ka Parivar) Eknath Shinde - एकनाथ शिंदे Dr Shrikant Lata Eknath Shinde please helpus save Akriti’s life 🙏🏻 mid-day.com/mumbai/mumbai-…