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Hello @cootiesgirl1 I am sorry to hear that you feel "lost" in your treatment. It is...
Have you considered contacting NORD ... NORD advocates for folks with rare disorders ... Here is the website,
--NORD
https ... rarediseases.org/
Take a look at the NORD ... searching for help with organizations like NORD
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There is a NORD near-ish to me. I'll call this week and see what they say.
There is a NORD near-ish to me.
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I looked up ELP on NORD and couldn't find it. Is it there under another name?
I looked up ELP on NORD and couldn'
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Located an expert on Lipoatrophy through NORD and GARD but now she stopped responding to me...
an expert on Lipoatrophy through NORD
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Have you been in touch with NORD? https://rarediseases.org/rare-diseases/myotonia-congenita/.
Have you been in touch with NORD?
Discussion
Rare Disease Day and Involvement
I received the latest message from NORD.Gov ... definition of the disease name, but NORD