NORD

[Guest guest]

Hi ,

Today as I was flipping through the channels, as we

were home bound due to the raging Nor'Easter outside,

I stopped at CNN and the president of NORD was on a

show called House Call...She was talking about NORD

and what it does...They mentioned a few diseases,

Rocking Disease being one of them...

I only caught the tail end of the interview, though...

Very cool!!! Maybe this will get some awareness out

there about Rare Diseases...

Jen

__________________________________________________

[Guest guest]

Hi Jen,

Sorry I missed that show. Erythema nodosum and pyoderma gangrenosum

might be tongue twisters but some of those rare diseases really have

funny names. Added together the rare disorders affect a huge number of

people, so it is great that we have NORD to speak for all of us.

It took a lot of campaigning to get NORD to accept us as a " rare

disorder " as they said we weren't really a disease at all, just a

" marker for something else " . Eventually I wore them down, though :-)

It's around 80 degrees here in Southern CA. Wish I could send this

pretty day to everyone affected by that blizzard.

Love,

[Guest guest]

Hi Jen,

Sorry I missed that show. Erythema nodosum and pyoderma gangrenosum

might be tongue twisters but some of those rare diseases really have

funny names. Added together the rare disorders affect a huge number of

people, so it is great that we have NORD to speak for all of us.

It took a lot of campaigning to get NORD to accept us as a " rare

disorder " as they said we weren't really a disease at all, just a

" marker for something else " . Eventually I wore them down, though :-)

It's around 80 degrees here in Southern CA. Wish I could send this

pretty day to everyone affected by that blizzard.

Love,