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Lanie
Unregistered User
(12/22/02 2:02 pm)
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Why NORD is a bad idea by Lanie - entered by C
Subj: [Fibromuscular_Dysplasia] Why NORD is a bad idea for FMD
Date: 12/22/02 8:34:06 AM Eastern Standard Time
From: soficrow@hotmail.com
Reply-to: Fibromuscular_Dysplasia@yahoogroups.com
To: Fibromuscular_Dysplasia@yahoogroups.com
Sent from the Internet (Details)



Drug companies fund most medical research, and they put up BIG
money. They spend Billions to find diagnoses, treatments and cures
because they make Trillions back. But they aren't interested in rare
diseases because the research doesn't pay. – Too few people are
affected, and the market is too small. They can't make money.

FMD is very common – so there is a lot of money to be made from FMD.
If drug companies knew how common FMD is, they would want to
research FMD. They would fight to be first with new diagnosis and
treatment.

Our problem is, most people still think FMD is rare. BUT, if they
knew it is common, we would get the attention we need.

So that is our job as an organization – get the word out. FMD is NOT
rare. FMD is a HUGE market. FMD is a great research investment.

If we go the opposite direction and struggle to be listed as a rare
disease with NORD, we are not just shooting ourselves in the foot.
It's a bullet to the brain.

Going to NORD is a bad strategy. We will only prove we are NOT
worthy of commercial funding. We will destroy our best strategy to
get research funding – for better diagnosis and treatment. We will
lose any hope of finding a cure.


- Lanie

Celeste
Unregistered User
(12/23/02 12:34 am)
Reply
NORD a bad idea?
FMD is listed with NORD already as a rare disease. I have received
hard copies of NORD litterature on FMD. If you want a copy, send me
a FAX number and will be glad to send it to you. You will see that
FMD is pandemic (spread accross geographic areas) as Lanie has been
saying all along.

As to research,money,drugs, and FMD (there is a song in there
somewhere). We agree that we need research on FMD. Research generates
medications which brings money to those who invest in the research
efforts. Without the research, there is no drugs, without the drugs
there is no money. That is what I am getting from that conversation.
Am I wrong here?

Lanie, I am hearing you say that if FMD is considered rare, what is
the incentive for research, and if we continue in the path of calling
FMD a rare disease, then the researchers wont come. I agree with that
way of thinking. So, if we register with a RARE disease organization,
that would make us a rare disease. BUT it is already listed as a rare
disease with NORD! There is something I am not getting
here...someone, please save me.

I cant wait until everyone in the group responds to the POLL, I think
it will clarify how we "see" the words rare, and how we want the new
organization to work. Click on POLL on the left and lets see how you
feel so your voice is counted.

Having the new organization listed with NORD makes no sense to me
since FMD is already listed with NORD. However, we have two people
who are experienced and able to bring this group together as an
organization and they have a plan. I dont see any alternatives
entered anywhere. I dont have an alternative and this is the best
thing since I was diagnosed in 2001. Not everyone is responding to
this questions and concerns raised by a few people
here...hummm...maybe because its the holidays?

Having this organization does not mean that we, as individuals,
cannot continue to do that which is our passion to do, like writting,
researching, and knocking on doors...at least, I wont stop.

On January 10 we are meeting to talk about these issues at the site
in www.fmdfaqs.com. Discussion prior to that date is, well, a good
thing.

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