Results for search term "#nord".

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Reply on Empty Sella Syndrome

Hi @amomma4, welcome to Mayo Clinic Connect. You'll notice that I moved your message to this existing discussion group about Empty Sella Syndrome. I did this so you can meet others who have this condition like @menville @jmb73

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Reply on Worsening osteomyelitis despite treatment in child

Hi @elen, this must be so worrying for you and your family. I'd tagging a few other members who have talked about osteomyelitis here on Connect, albeit different areas of the body. @tooyoung @k245888 @konniehoover,

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Reply on Inflammation, face gets hot and red

@januaryjane there is another discussion on Connect for Erythromelalgia with the same symptoms except not with the face. I did learn that it can occur in the face only and be very hard to diagnose. Here is a link to the discussion on Connect and also the [...]

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Reply on Chromosome 3 Deletion Syndrome

@mcconnector, with rare diseases, I often first turn to NORD (National Organization for Rare Disorders) to find experts and researchers. See this page https://rarediseases.org/rare-diseases/chromosome-3-monosomy-3p/ Since your son's Chromosome 3 Deletion Syndrome has similarities with behaviors on the autism spectrum, I've also added this discussion to our [...]

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Reply on Primary Biliary Cholangitis and Autoimmune Hepatitis

Hello @foustr68, Welcome to Connect. There is an existing discussion for Primary biliary cholangitis (PBC) where you can meet other members and learn how they are managing PBC. I'm tagging our moderator @ethanmcconkey to see if we can move your post to the following [...]

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Reply on Chronic Pain members - Welcome, please introduce yourself

@kimspr3 I'm glad to hear someone is getting information from NORD. I have an ultra-rare kidney disease [less than 50 in the world ever diagnosed with it], and they can offer me nothing. Ginger [...]