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Topic: Email from National Instsitute of Health (Read 456 times) |
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don
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Email from National Instsitute of Health
« on: Jun 23rd, 2003, 2:28pm » |
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The response for requesting CH be put on the list of rare diseases;
Dear Sir: The estimated prevalence of cluster headaches is somewhere close to but under 1% of the US population. "Rare" is defined as fewer than 200,000 persons in the U.S. who are affected. Unfortunately the prevalence of "cluster headaches" is not within that limit. Thanks you for your consideration, however.
Best regards,
Henrietta Hyatt-Knorr
Director, Policy and Program Planning and Analysis
Office of Rare Diseases, ODP/OD
National Institutes of Health
6100 Executive Boulevard, Suite 3B01
Bethesda, MD 20892-7518
Tel: 301-435-6045
Fax: 301-480-9655
E-mail: hh70f@nih.gov
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Karla
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Re: Email from National Instsitute of Health
« Reply #1 on: Jun 23rd, 2003, 2:34pm » |
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well la ti da. 
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Karla
suffer chronic ch
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Proud Mom of Chris USMC Semper Fi
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Margi
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Re: Email from National Instsitute of Health
« Reply #2 on: Jun 23rd, 2003, 2:36pm » |
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WTF?
I was SURE Bob told us last year at the convention that we HAD been put on this list.....?
I'd even bet one of your kidneys on this, Don.
Seriously.
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kathy copelin, ch.com 8/8/06
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cathy
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Re: Email from National Instsitute of Health
« Reply #3 on: Jun 23rd, 2003, 2:36pm » |
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Hmmmmmmmm....maybe we ought to ask them a question...... if it's not rare and as far as im concerned not common WTF is it then.... ???
Cathy
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don
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Re: Email from National Instsitute of Health
« Reply #4 on: Jun 23rd, 2003, 2:37pm » |
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I guess this is one case where there is not power in numbers.
Quite frankly we should probably stay off that list anyway. Insurance companies aren't even going to budge for small numbers.
Simple economics.
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| « Last Edit: Jun 23rd, 2003, 2:38pm by don » |
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Margi
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Re: Email from National Instsitute of Health
« Reply #5 on: Jun 23rd, 2003, 2:41pm » |
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Don, here it is - I KNEW we were on someone's list....this is taken from the summary of last year's convention over at the OUCH website
"At the request of the National Organization for Rare Diseases (NORD), we have submitted our Organization information to be included in their database as a resource for cluster sufferers."
I had the wrong organization. My apologies to your kidney.
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http://askusaboutourgrandkids.photosite.com/
And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
source unknown
IMHO (which in my universe is correct)
kathy copelin, ch.com 8/8/06
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Mark C
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Re: Email from National Instsitute of Health
« Reply #6 on: Jun 23rd, 2003, 2:43pm » |
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Rare
Pronunciation: 'rar, 'rer
Function: adjective
Inflected Form(s): rar·er; rar·est
Etymology: Middle English, from Latin rarus
Date: 14th century
1 : marked by wide separation of component particles : THIN <rare air>
2 a : marked by unusual quality, merit, or appeal : DISTINCTIVE b : superlative or extreme of its kind
3 : seldom occurring or found : UNCOMMON synonym see CHOICE, INFREQUENT - rare·ness noun
Hmmmmmmmm...sounds rare to me, but what do I know, I am just a poor common HA sufferer!
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catlind
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Re: Email from National Instsitute of Health
« Reply #7 on: Jun 23rd, 2003, 2:54pm » |
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Margi,
I subscribe to the NORD newsletter and can verify that in the last mailing Cluster Headaches were indeed on the list.
Cat
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KingOfPain
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Re: Email from National Instsitute of Health
« Reply #9 on: Jun 23rd, 2003, 3:32pm » |
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Cyclic Cluster Headache
Guess that's me.
Thanks for the link cbolony.
Modification:
Just saw this, (from the above site/link in cbolony's post):
"Cluster headaches are a rare form of severe disabling headache."
KOP
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| « Last Edit: Jun 23rd, 2003, 3:36pm by KingOfPain » |
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We swallow greedily any lie that flatters us, but we sip only little by little at a truth we find bitter.
- Denis Diderot
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don
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Re: Email from National Instsitute of Health
« Reply #10 on: Jun 23rd, 2003, 3:35pm » |
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Quote:| My apologies to your kidney |
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ROFLMAO
It's my liver that needs the compassion. LOL
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Live4Fun
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Re: Email from National Instsitute of Health
« Reply #11 on: Jun 23rd, 2003, 3:35pm » |
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I got the same reply from NIH... 
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don
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Re: Email from National Instsitute of Health
« Reply #12 on: Jun 23rd, 2003, 3:43pm » |
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Hold up!
We dont want to be on their damn list anyway.
We can't on the one hand be telling insurance companies there are enough of us for them to market for us and turn a profit and on the other hand be on a list of rare diseases.
Lets pick our battles wisely.
They suck and we dont! NYAH!
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brain_cramps
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Re: Email from National Instsitute of Health
« Reply #13 on: Jun 23rd, 2003, 3:52pm » |
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Interesting... I wonder where they got the figure of 1%. A few months ago it was pointed out to me that the rate of CH is approximately 69 in 100,000 (in the Republic of Sam Marino). Far lower than the 1% used by the NIH. Upon doing a search, I found that the rate is approximately 56 in 100,000 (in the Republic or San Marino).
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed &list_uids=12011291&dopt=Abstract
Anyone know what the prevalence rate in the USA is, as opposed to that of the Republic of San Marino?
According to the 2000 census, the population of the USA is approximately 281,400,000.
http://www.usatoday.com/graphics/census2000/uspop/uspop.htm
so... 281,400,000 / 100,000 * 69 = 194,166
or 281,400,000 / 100,000 * 56 = 157,584
Last time this discussion came up, it was 'Bob P' that pointed out my incorrect prevalence rate.
It seems that the NIH can make statistics reflect what they think is convenient at the time.
Any comments?
grant ???
P.S. I know someone will say that I'm splitting hairs, incorrect in my calculation, etc... Once again, someone explain my inaccuracy, please.
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| « Last Edit: Jun 23rd, 2003, 3:53pm by brain_cramps » |
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Ueli
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Re: Email from National Instsitute of Health
« Reply #14 on: Jun 23rd, 2003, 4:05pm » |
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Damn it!
Someone e-mail this bean counter and teach her some simple arithmetic.
Ueli 
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Azrael
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Re: Email from National Instsitute of Health
« Reply #15 on: Jun 23rd, 2003, 5:35pm » |
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Someone should ask the lady where she obtains her facts... The World Headache Alliance says, "Cluster headache affects more males than females, although female prevalence is rising. CH is a very rare disorder, affecting approximately 0.1 to 0.4% of the general population."
According to the census board, the estimated population of the United States of America is currently 291,319,140. 291,319 to 1,165,277 is still too many for the NIH rare diseases club, but it's a hell of a lot closer than her estimate of 2,913,191.
PFDAN................................... Drk^Angel
PS... Anyone else notice that the WHA lists CH.com as their second link for cluster headaches behind CHhelp.org? Hell... CH.com link even appears before the medical sites. 
DA
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"Hello police? I would like to report a robbery. Someone stole all my beer while I was drunk."
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