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Topic: CH - the Orphaned Orphan Disease (Read 632 times) |
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dellp
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CH - the Orphaned Orphan Disease
« on: Jun 21st, 2003, 8:30am » |
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Below is a link for an NIH list of rare/orphan diseases. I'll tell you right now that CH is not listed.
http://ord.aspensys.com/asp/diseases/diseases.asp
There is a place there to request information on certain conditions not listed and if there are enough requests the disorder will be added to the list. Maybe this is a good place to start an awareness campaign.
That might make a good start for a news story: "Cluster Headaches finally added to NIH list or rare/orphaned diseases"
??
Dell
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| « Last Edit: Jun 21st, 2003, 8:01pm by dellp » |
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don
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Re: CH - the Orphaned Orphan Disease
« Reply #1 on: Jun 21st, 2003, 8:33pm » |
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Email sent on behalf of OUCH.
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judyw
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Re: CH - the Orphaned Orphan Disease
« Reply #2 on: Jun 22nd, 2003, 4:17am » |
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Thanks for the suggestion and the where to information, Dell ...mail sent
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dellp
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Re: CH - the Orphaned Orphan Disease
« Reply #3 on: Jun 22nd, 2003, 1:28pm » |
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Thank you both Don and Judy. It's nice to see at least 3 of us are interested in having CH classified with the NIH.
 ;D ;D
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The hell with 'love' everybody - how 'bout just respect for everybody
Sometimes you eat the bear and sometimes the bear eats you.
"I am what I am and dat's all what I am.": Popeye the sailor man
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Live4Fun
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Re: CH - the Orphaned Orphan Disease
« Reply #4 on: Jun 22nd, 2003, 2:04pm » |
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Dell,
Email on the way. (sorry I missed this thread the first time around)...
Bryan
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"If you hear a different drummer, dreamer take a chance... The road you choose to follow means the difference in the dance." (D. Morgan) -- Bryan
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Not4Hire
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Re: CH - the Orphaned Orphan Disease
« Reply #5 on: Jun 22nd, 2003, 2:18pm » |
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...been there, done that:
http://tinyurl.com/eyx7 (see Reply # 36)...ya might want to copy/paste/edit the form letter and send that....
and the rest of that thread was pretty good stuff too....
..good on ya, *dellp* fer reminding me..... maybe don will promote ya to Oarsman 3rd Class....
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dellp
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Re: CH - the Orphaned Orphan Disease
« Reply #6 on: Jun 22nd, 2003, 6:28pm » |
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THANK YOU Not4Hire, BobP and everyone who did their homework. That thread and the work accomplished is absolutely INCREDIBLE!
That homework required 15-20 minutes, this asks only 1 or 2 minutes - click on the link, click on the email link, type subject: cluster headaches, content: "I am looking for info on CH and it is not listed. Thank you" That is all that is needed.... and more is good, too.
BobP and crew, do you think that assignment (August of 2002) should/could be an annual event? Once again, kudos to all who participated.
Dell
And BTW N4H, I hope you do not feel exempt from this little chore
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The hell with 'love' everybody - how 'bout just respect for everybody
Sometimes you eat the bear and sometimes the bear eats you.
"I am what I am and dat's all what I am.": Popeye the sailor man
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Not4Hire
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Re: CH - the Orphaned Orphan Disease
« Reply #7 on: Jun 22nd, 2003, 8:11pm » |
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dellp...I am Officially (Exempt) from All Chores on FUD's Frigate...except rowin'... that's O FAC OFF.....
when I said "been there, done that"... I meant: the email was sent....OK?
...if ya want *threatening email*..... i got yer link *hangin*.....heh
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JDH
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Re: CH - the Orphaned Orphan Disease
« Reply #8 on: Jun 22nd, 2003, 8:44pm » |
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Mail sent from this end.
Thanks for the link Dell.
Jim
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Charlie
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Re: CH - the Orphaned Orphan Disease
« Reply #9 on: Jun 22nd, 2003, 10:48pm » |
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Thanks Dell.
I sent a little note to them and who knows, it might make a difference.
Cutting and pasting the same letter isn't a good idea though. In fact, for Congress and the like, nothing beats snail mail. It actually has to be opened and usually gets a relpy. No delete button.
Nice going Dell
Charlie
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dellp
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Re: CH - the Orphaned Orphan Disease
« Reply #10 on: Jun 23rd, 2003, 8:50am » |
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on Jun 22nd, 2003, 8:11pm, Not4Hire wrote:when I said "been there, done that"... I meant: the email was sent....OK?
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N4H, please forgive my denseness.
Don, Thank you for the "What's wrong with this picture" post.
Acknowledgement an appreciation to the rest of ya 
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The hell with 'love' everybody - how 'bout just respect for everybody
Sometimes you eat the bear and sometimes the bear eats you.
"I am what I am and dat's all what I am.": Popeye the sailor man
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cathy
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Re: CH - the Orphaned Orphan Disease
« Reply #11 on: Jun 23rd, 2003, 11:11am » |
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Hey thanks for the heads up Don I did miss this post.....but better late than never... ;D
Email sent from across the pond.
Cathy
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cbolony
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Re: CH - the Orphaned Orphan Disease
« Reply #12 on: Jun 23rd, 2003, 11:45am » |
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e-mail sent
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Live4Fun
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Re: CH - the Orphaned Orphan Disease
« Reply #13 on: Jun 23rd, 2003, 1:35pm » |
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OK, now I am stormin mad... 
I sent this person a nice e-mail asking them to please consider adding CH to their list, and this is all I get back...
"The legal definition of rare is fewer than 200,000 persons in the U.S.
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"
Anybody up for spamming this email address?!?!? ARGH!
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"If you hear a different drummer, dreamer take a chance... The road you choose to follow means the difference in the dance." (D. Morgan) -- Bryan
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Charlie
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Re: CH - the Orphaned Orphan Disease
« Reply #14 on: Jun 23rd, 2003, 5:38pm » |
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I got the reply too...
Clusters to this idiot
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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