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Mashup Score: 2Patient-Centric Trial Design (PaCTD) Rating Criteria - I AM ALS - 10 month(s) ago
The PaCTD rating system was created by a group of patient and caregiver volunteers on the I AM ALS Clinical Trials Team. Their goal is to outline criteria for humane and efficient trial design. This rating system objectively evaluates trials based on select trial design elements in three key categories: optimizing access to investigational therapies, advancing scientific progress and if the trial…
Source: I AM ALSCategories: Latest Headlines, Rare DiseaseTweet
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Mashup Score: 0Patient-Centric Trial Design (PaCTD) Rating Criteria - I AM ALS - 11 month(s) ago
The PaCTD rating system was created by a group of patient and caregiver volunteers on the I AM ALS Clinical Trials Team. Their goal is to outline criteria for humane and efficient trial design. This rating system objectively evaluates trials based on select trial design elements in three key categories: optimizing access to investigational therapies, advancing scientific progress and if the trial…
Source: I AM ALSCategories: Latest Headlines, Rare DiseaseTweet-
Important stuff. Thanks to the volunteers who work on these ratings to make sure that therapy developers know what we will and won't accept. https://t.co/qYXGnIDbsg.
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Mashup Score: 1The Artistry of ALS - I AM ALS - 11 month(s) ago
Artist Robert Genn once said, “Art is a form of love. Art is the ultimate gift. Art heals life.” Art is also a force that is alive and well in the ALS community. ALS can be an incredibly confining disease, both emotionally and physically, but art can transcend these confines. Art can provide healing from the emotional scars of ALS and be a means of expression when other means are taken away. In…
Source: I AM ALSCategories: Latest Headlines, Rare DiseaseTweet-
RT @RunningMama0522: Have you visited @iamalsorg virtual art gallery yet? Go to https://t.co/6Sr8AZD12K to see the incredible work from t…
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Mashup Score: 1Calling All First Responders: Come Learn About ALS - I AM ALS - 1 year(s) ago
When an emergency strikes, we want you, our first responders, on the scene. We know that you as emergency personnel are highly skilled and trained to handle any number of emergencies and disasters. But when that emergency involves someone living with ALS, things can be more complicated. People living with ALS have unique medical and communication needs that are important for you to know and…
Source: I AM ALSCategories: Latest Headlines, Rare DiseaseTweet-
Please fwd this to your local fire dept on twitter. Free panel for first responders to learn about ALS and things they need to know when helping people w ALS. May 23. https://t.co/RCjDny9DzY I’ll start. @IFD_NEWS @Indylocal416
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Mashup Score: 1
Some health professionals and emergency personnel may not be familiar with the unique needs of a person with ALS. As such, it’s important to know what information is essential to share to ensure you or your loved one receives appropriate care in an emergency medical situation. The information on this page includes advice from patients, caregivers, ALS physicians and The ALS Association. ALS…
Source: I AM ALSCategories: Latest Headlines, Rare DiseaseTweet-
RT @ArrestALSNow: @adamfwilson426 @uc_health https://t.co/vyKBEKMVLk
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Mashup Score: 7Be part of I AM ALS' 2023 ALS Awareness event! - I AM ALS - 1 year(s) ago
ALS Awareness Month 2023 is right around the corner, and we’re planning to show up strong on the National Mall in Washington, DC from May 11-13, 2023. As with everything, we want to put the ALS community at the center of our event. Therefore, we will be displaying 6,000 flags bearing the names of those living with ALS and those we have lost to ALS on the National Mall. Sign up here to have your…
Source: I AM ALSCategories: Latest Headlines, Rare DiseaseTweet-
There will be 6000 flags on the Mall. It should not be hard for us to supply 6000 names to put on those flags. Dig into your memory & remember those who are long gone from ALS. Let's get 6000 names out there. https://t.co/zy4IN5t7z9
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Mashup Score: 1Tell Cigna: Approve Coverage for Relyvrio - I AM ALS - 1 year(s) ago
I AM ALS is appalled by Cigna’s decision to not cover an FDA approved treatment for ALS that extends functionality and life. Cigna needs to immediately reverse this decision. People living with ALS deserve better and don’t have time to wait while battling an always fatal disease. We created this form that will tweet for you and tag your senators and representatives so they know that Cigna’s…
Source: I AM ALSCategories: Latest Headlines, Rare DiseaseTweet-
RT @drjpo: Tell Cigna: Approve Coverage for Relyvrio https://t.co/yIs5b5IHiA Cigna is the ONLY carrier who is NOT covering this life extend…
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Mashup Score: 0Request a Panel of People Impacted by ALS - I AM ALS - 1 year(s) ago
There are some things you can’t learn from a lecture or textbook. You need to hear it from those living in the reality of ALS! This is why the I AM ALS Community Outreach Team is offering the Tim Lowrey ALS Panel Series to bring in a virtual panel discussion for your group, class, association, organization or club. Panelists will: Share stories of symptoms, diagnosis and living with…
Source: I AM ALSCategories: Latest Headlines, Rare DiseaseTweet-
Yesterday I got to participate in a @gatortimbo panel of PLWALS & caregivers who spoke w some HS students (including a hockey team). These panels are a unique & valuable opportunity for people to learn about ALS & have their questions answered. https://t.co/B2M6r7tJyZ
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Mashup Score: 0Patient-Centric Trial Design (PaCTD) Rating Criteria - I AM ALS - 1 year(s) ago
The PaCTD rating system was created by a group of patient and caregiver volunteers on the I AM ALS Clinical Trials Team. Their goal is to outline criteria for humane and efficient trial design. This rating system objectively evaluates trials based on select trial design elements in three key categories: optimizing access to investigational therapies, advancing scientific progress and if the trial…
Source: I AM ALSCategories: Latest Headlines, Rare DiseaseTweet-
This rating system is huge. It is a system that should be used and understood throughout ALS Land. It sets the rules for ALS trials that people living with ALS expect and deserve. We should talk about it with sponsors every chance we get. https://t.co/qYXGnICDCI.
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Mashup Score: 0In Memoriam Video - I AM ALS - 1 year(s) ago
In 2022, we lost a lot of incredible people to ALS, and it’s been really hard. Our hearts are broken. As we move forward and work to heal from these difficult losses, we seek to honor those who passed, because we were lucky enough to meet and know some incredible people who will always mean so much to us. With this feeling, we would like to pay tribute to those we lost this year. We are…
Source: I AM ALSCategories: Latest Headlines, Rare DiseaseTweet-
2022 has been an absolutely brutal year of loss of loved people to ALS. If you have lost someone, you may have her or him included in this tribute -- https://t.co/x0nmnGeXSH
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Pactd ratings are important. Humane trials will fill faster. Humane trials provide OLE. Humane trials provide Expanded Access for those who do not qualify for the trials. Companies that do the right thing will get to market faster. Win-Win. https://t.co/TWdJnjWOA3.