I hope this post gets as many eyes on this as possible - please take a few minutes to read if you can.
Devdan is born with Type 2 Spinal Muscular Atrophy (SMA) – a rare condition that damages nerve cells in the brain and spinal cord. This leads to progressive muscular weakness and trouble with activities such as breathing, speaking, swallowing, and walking.
Zolgensma, is a ONE-TIME-ONLY gene therapy treatment for children aged under 2 years with SMA which costs $2.8 MILLION.
Devdan turns 2 in Oct so this is a race against time to raise this money before FDA will send this drug out. I myself have donated, and so far we have clocked over $1 million which is fantastic but we still have yet to reach our goal. Appreciate it if you can spare a donation - no amount is too small. 🙏🏼
Stay strong Devdan, always remember God is fighting with and for you. ❤️
DONATE HERE: https://rayofhope.sg/campaign/please-give-devdan-a-second-chance-of-life/
sma zolgensma 在 Mamă de Matei Facebook 的最佳解答
România, țara ai căror oameni au salvat viața unor copii.
Copii ai căror drept la viață a costat 2.1 milioane de dolari. Iar noi am strâns banii pentru ei.
Astăzi vă rog să ne alăturăm lui Alexandru, un micut luptator de 2 ani si 9 luni, care sufera de SMA 1, cea mai grava forma si are nevoie cat mai curand de terapia ZolgenSMA in valoare de 2.1 milioane $.
Haideți să îi plătim dreptul la viață. Nu există donație prea mică.
Vă mulțumesc pentru că sunteți minunați.
Mai jos link-ul pentru donație și în primul comentariu conturile pentru donație.
https://www.facebook.com/donate/384347319223084/?fundraiser_source=external_url
sma zolgensma 在 工商時報 Facebook 的最讚貼文
【這款世上最貴藥物 日本擬定價逾1.6億日圓】
目前日本境內最昂貴的藥物是治療白血病的Kymriah,藥價是3,349萬日圓(約新台幣元994萬元),而今將有新挑戰者Zolgensma。
厚生勞動省擬將「世上最貴藥物」定價在約新台幣4,500萬元至4,800萬元,這種治療孩童罕見基因疾病的藥物將列為適用保險的對象…
📌 全球最貴藥物賣翻 諾華去年財測high起來
https://ctee.com.tw/news/global/162766.html
#Zolgensma #SMA #日本 #厚生勞動省 #諾華 #Kymriah