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Hi Katie. Thanks for sharing the info. Great that you’re able to participate the trial. I hope that you’ll be able to experience a greater positive effect soon.

I was just wondering —  given that Pridopidine works by binding and activating the sigma-1 receptor, do you perhaps know if this drug would also work for PALS with SIGMAR1 gene…[Read more]

Indeed, I might’ve acted a bit naively there. Still young though 🙂 I’ve also joined Patients Like Me sometime ago, trying to find answers wherever I can. None of them really helped so far, but in the future, who knows.

Hi Lisa. I’ve just joined ‘stuffthatworks’ on your suggestion. I also think that it’s a good website that we could all benefit from it so I share your recommendation for everybody to join in.

I was just informed yesterday that Phase III Trial of AMX0035 is expected to start within a month in Europe (not certain, but expected).

I was asked by my doctor would I consider participating. However, I don’t know what would be the best decision –> if I choose to participate I can’t start with TUDCA now and there’s a chance of getting a…[Read more]

It seems that Nuticost brand is not available in EU. I have access to Amazon.com (US site) and could buy it there but I’m afraid that it’s not allowed to get them imported into The Netherlands (EU). They may be withheld by customs..

I did find some alternative TUDCA brands though but none of them seems too legit (Brawn nutrition, Hepatica / DG…[Read more]

I would like to take Nutricost TUDCA and Theracurmin HP as in the trials, but having difficulties purchasing them in Europe. Does anyone know of any alternatives that are available in EU / Netherlands? Or ways to purchase and ship these from US in bulk? Where do you get your supplements from?