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Mashup Score: 0People With ALS Deserve Access AND Proof of Efficacy - 8 month(s) ago
Dear Advisory Committee Advisors, FDA Staff, and, yes, Brainstorm Cell Therapeutics Management, As you know from hundreds of other comments,…
Source: als-advocacy.blogspot.comCategories: Latest Headlines, Rare DiseaseTweet
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Mashup Score: 3People With ALS Deserve Access AND Proof of Efficacy - 8 month(s) ago
Dear Advisory Committee Advisors, FDA Staff, and, yes, Brainstorm Cell Therapeutics Management, As you know from hundreds of other comments,…
Source: als-advocacy.blogspot.comCategories: Latest Headlines, Rare DiseaseTweet-
"Springs that have been stretched too far don't just bounce right back." https://t.co/DQDHkAIJfB https://t.co/NwVQJ4CH9H
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Mashup Score: 0Time's A Wasting - 9 month(s) ago
The ALS clock is running. In the next few weeks, the FDA will make a decision regarding approval of NurOwn for ALS. Either way, another tri…
Source: als-advocacy.blogspot.comCategories: Latest Headlines, Rare DiseaseTweet-
Same trial. If you start it today, it's called a Ph 3 trial. If wait to start it until after an approval, it's called a Ph 4 confirmatory trial. The sooner it starts, the sooner it finishes. https://t.co/a2xbF1953a
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Mashup Score: 1Time's A Wasting - 10 month(s) ago
The ALS clock is running. In the next few weeks, the FDA will make a decision regarding approval of NurOwn for ALS. Either way, another tri…
Source: als-advocacy.blogspot.comCategories: Latest Headlines, Rare DiseaseTweet-
Either way, another trial is needed, so let's get moving! https://t.co/a2xbF1953a https://t.co/UXH6bx1wSx
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Mashup Score: 0"Never Wrestle With A Pig" - 11 month(s) ago
At the risk of giving some recent nonsense any more oxygen, I think it’s important to document a few things. I try to live by the “never wr…
Source: als-advocacy.blogspot.comCategories: Latest Headlines, Rare DiseaseTweet-
Documenting a few things... https://t.co/NHBH6QjGDg
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Mashup Score: 0Every 90, 85, 80, 75 Minutes - 1 year(s) ago
“Every 90 Minutes” has been a tagline that organizations have used for over a decade to describe how often someone dies from ALS in the US. …
Source: als-advocacy.blogspot.comCategories: Latest Headlines, Rare DiseaseTweet-
Every n minutes. https://t.co/PRi9mUWa81
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Mashup Score: 0To Make Good Decisions, You Need Good Data - 1 year(s) ago
It’s pretty basic. You can’t make good decisions without good data. And a core decision in moving ahead with any project is to weigh the …
Source: als-advocacy.blogspot.comCategories: Latest Headlines, Rare DiseaseTweet-
B4 we spend another dime on CDC ALS Registry, we need a functional accounting of how they spent the last $10,000,000. This is basic to good business decisions. Why wont CDC provide? Why wont ALS orgs insist? Why oh why? https://t.co/lq7ptIfWcR https://t.co/lwBZsIrOLk
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Mashup Score: 0"Do You Know What The Worst Part Is?" - 1 year(s) ago
#whatwouldyougive That’s a movement that originated with @speed4sarah. You can read up on it on her blog http://www.speed4sarah.com/sara…
Source: als-advocacy.blogspot.comCategories: Latest Headlines, Rare DiseaseTweet-
upping my game to no right hand for 3 weeks... and its still infinitely better than als. https://t.co/gLI5CRstte
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Mashup Score: 0There Are Elephants In The Room - 1 year(s) ago
A little over a week ago we got the wonderful news that a drug had been approved for ALS in the US. Since then we have had multiple news…
Source: als-advocacy.blogspot.comCategories: Latest Headlines, Rare DiseaseTweet-
Back to 2017. We couldn't get any patient advocacy organizations to even talk about it, so here we are. And if you throw up your hands and say patient advocacy organizations can't affect price, look at some parents of children w serious diseases. https://t.co/yK3ivtnLIw 4/end https://t.co/6D720J96vH
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Mashup Score: 0We Have A Santa Claus Problem - Part I - 1 year(s) ago
We have a Santa Claus problem. NIH We read of an NIH that has expertise and exerts leadership in other areas such as cancer or infectious …
Source: als-advocacy.blogspot.comCategories: Latest Headlines, Rare DiseaseTweet-
You get a grant and you get a grant and you get a grant and ... https://t.co/MwG2CdWE0U https://t.co/uHWab4cSZl
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Six years of excuses. "We can't..." "We can't..." "We can't..." Enough. Lesson learned -- Ever time we hear, "We can't...," we must probe and challenge. https://t.co/DQDHkAIJfB