AyaanshFightsSMA

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AyaanshFightsSMA

AyaanshFightsSMA

@FightsSma

Ayaansh is an SMA warrior and received 🧬Zolgensma at age 3 years+. (09/06/21)

Hyderabad, India Katılım Şubat 2021
258 Takip Edilen491 Takipçiler
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AyaanshFightsSMA
AyaanshFightsSMA@FightsSma·
Struggle of a lifetime and here we are! Yesterday, Ayaansh has been dosed for Zolgensma, the ₹16 Cr. drug we hve bn talkn abt all this while. He's stable & hopefully will improve from here. A big thank you to all our 65k donors for gvng a new life to my boy🙏 #savedayaanshgupta
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Cure SMA Foundation of India 🇮🇳
Cure SMA Foundation of India 🇮🇳@curesmaindia·
Patient & parent of @curesmaindia r livin r worst nightmare V've been requestin Govt 2 intervene as v r loosing precious lives despite n apprvd drug #Risdiplam available in India dat can save lives @sardesairajdeep n @Milan_reports tks 4 raising plight of #RareDisease patients
IndiaToday@IndiaToday

Kids with rare diseases let down! Neha Mitra, Parent tells her ordeal. No patient has benefitted out of this policy till date: Saurabh Singh, Director, RDIF #NewsToday with @Sardesairajdeep

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Alpana Sharma
Alpana Sharma@alpanaS16·
Patient & parent @curesmaindia r livin d worst nightmare We hv been requestin 4 Govt intervention but r loosin precious live despite an approved therapy being available but not accessible. @sardesairajdeep told @PandaVashist to get in touch wid u @Milan_reports #BattleAgainstSMA
Milann Desai@Milan_reports

As family after family watches their children die awaiting treatment of #RareDisease -a sordid tale of how the govt made a policy that is stuck since 2021, 10 children died, not one got funds be it #spinalmuscularatrophy or #huntersyndrome #hurlersyndrome An exposé @IndiaToday

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Cure SMA Foundation of India 🇮🇳
Cure SMA Foundation of India 🇮🇳@curesmaindia·
We thank Govt.of Kerala @KeralaHealth for conducting an elaborate screening for SMA patients at SAT Hospital, Trivandrum. The process was extremely smooth with the presence of trained and efficient doctors. We look forward to a day when #Treatment4All SMA patients can be achieved
Cure SMA Foundation of India 🇮🇳 tweet mediaCure SMA Foundation of India 🇮🇳 tweet media
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Alpana Sharma
Alpana Sharma@alpanaS16·
Our heartfelt gratitude to @pradyutbordoloi 🙏🏻🙏🏻 for givin d much needed voice & support for our patient & children sufferin & Dyin #RareDisease #SpinalMuscularAtrophy We @curesmaindia request @PMOIndia @narendramodi @nsitharaman @nsitharamanoffc 4 lifesavin drug #Evrysdi @Roche
Pradyut Bordoloi@pradyutbordoloi

Urge the @FinMinIndia to consider a blanket waiver on customs duty and GST for such life saving drugs, which are estimated to make up 30% of the total cost, rather than compelling families to seek ad-hoc exemption on case-by-case basis.

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Alpana Sharma
Alpana Sharma@alpanaS16·
Request Hon’rable @FinMinIndia @nsitharaman @nsitharamanoffc to full waiver of Custom duty ,GST & Cess of @Roche drug #Evrysdi ,only approved treatment in India 4 SMA Full wavier ‘ll help brin down d cost of drug so that lives of SMA patient can be saved @GST_Council @cbic_india
Pradyut Bordoloi@pradyutbordoloi

Urge the @FinMinIndia to consider a blanket waiver on customs duty and GST for such life saving drugs, which are estimated to make up 30% of the total cost, rather than compelling families to seek ad-hoc exemption on case-by-case basis.

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Keşfet

@doctorsoumya @curesmaindia @sardesairajdeep @Milan_reports @PandaVashist @narendramodi @mansukhmandviya @ChivateMangesh