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Have you applied for access to experimental treatments?
There are a number of laws that support helping people with rare and terminal illnesses access experimental treatments. One law states that the FDA will review applications and make decisions within 30 days.
Have you applied for compassion care or early access? What was your experience like? What obstacles did you encounter?
https://alsnewstoday.com/news/landmark-act-for-als-act-president-biden/
https://alsnewstoday.com/news/funding-expands-access-seelos-investigational-als-therapy-sls-005/
https://alsnewstoday.com/news/kulicke-soffa-donation-expands-access-als-investigational-therapies/ -
1 Reply
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no, but I’d like to. I’d like to live a little bit longer and enjoy some sort of retirement
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Utahna,
Have you talked to your doctors about trials? Have you had genetic testing done that tells you is your ALS is sporadic or familial? There is a government website that list clinical trials and I’m sure some of our members can make suggestions on places to contact to see if you are a candidate.
Amanda
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