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Hello Kat, great German find on CMT at onelist! I too am a bit miffed

when I see wrong info! Now, this is bugging me, but for you or anyone

else, why is CMT 'classified' as a 'rare disorder'? My understanding is

that it is the most common inherited neurological disorder - it would

seem that it is really not 'rare'. Perhaps just the 'visibility factor'

- CMT just isn't as well known as say MS, for example, is that how that

'rare disorder' title happened?

Gretchen

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I have a problem with " most common inherited neurological disorder " because

I believe " most common " could be understood wrong. The disease really is

rare because only 0.4% of the worlds population have it. And because there

are not many neurological disorders it is said that cmt is the most common.

But fact is that most doctors in this world never will meet a patient who

has cmt.

In Germany there are about 32.000 people (statistically) who have cmt but

how many of them know about them having the disease? So, in reality most of

the patients never even heard about cmt and the doctors also couldn' t tell

them because they don' t know. It is like a wheel. MS has a lobby know

because it was made known to the public. This is what should be done with

cmt also.

Bye,

Gretchen Glick schrieb:

> Hello Kat, great German find on CMT at onelist! I too am a bit miffed

> when I see wrong info! Now, this is bugging me, but for you or anyone

> else, why is CMT 'classified' as a 'rare disorder'? My understanding is

> that it is the most common inherited neurological disorder - it would

> seem that it is really not 'rare'. Perhaps just the 'visibility factor'

> - CMT just isn't as well known as say MS, for example, is that how that

> 'rare disorder' title happened?

>

> Gretchen

>

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