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@nataliem

Thank you for this resource that I did not know existed. I feel slightly more hopeful, and I will be donating to the cause!

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Replies to "Thank you for this resource that I did not know existed. I feel slightly more hopeful,..."

I'm glad to hear it - I was reading a little there, and you should be able to connect with others too - if not directly, maybe by following links.
That was how I found Mayo Connect when I was diagnosed with an uncommon disease.
Sue