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        New Message Board Archives >> 2003 Posts >> CH - the Orphaned Orphan Disease
        
(Message started by: dellp on Jun 21^st, 2003, 8:30am)

Title: CH - the Orphaned Orphan Disease
Post by dellp on Jun 21^st, 2003, 8:30am

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

Title: Re: CH - the Orphaned Orphan Disease
Post by don on Jun 21^st, 2003, 8:33pm

Email sent on behalf of OUCH.

Title: Re: CH - the Orphaned Orphan Disease
Post by judyw on Jun 22^nd, 2003, 4:17am

Thanks for the suggestion and the where to information, Dell ...mail sent

Title: Re: CH - the Orphaned Orphan Disease
Post by dellp on Jun 22^nd, 2003, 1:28pm

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 ;D

Title: Re: CH - the Orphaned Orphan Disease
Post by Live4Fun on Jun 22^nd, 2003, 2:04pm

Dell,

Email on the way. (sorry I missed this thread the first time around)...

Bryan

Title: Re: CH - the Orphaned Orphan Disease
Post by Not4Hire on Jun 22^nd, 2003, 2:18pm

...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....
;D

Title: Re: CH - the Orphaned Orphan Disease
Post by dellp on Jun 22^nd, 2003, 6:28pm

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 ;D

Title: Re: CH - the Orphaned Orphan Disease
Post by Not4Hire on Jun 22^nd, 2003, 8:11pm

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
;D

Title: Re: CH - the Orphaned Orphan Disease
Post by JDH on Jun 22^nd, 2003, 8:44pm

Mail sent from this end.
Thanks for the link Dell.

Jim

Title: Re: CH - the Orphaned Orphan Disease
Post by Charlie on Jun 22^nd, 2003, 10:48pm

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

Title: Re: CH - the Orphaned Orphan Disease
Post by dellp on Jun 23^rd, 2003, 8:50am

on 06/22/03 at 20:11:07, Not4Hire wrote:

when I said "been there, done that"... I meant: the email was sent....OK?

N4H, please forgive my denseness. ;D

Don, Thank you for the "What's wrong with this picture" post.

Acknowledgement an appreciation to the rest of ya ;)

Title: Re: CH - the Orphaned Orphan Disease
Post by cathy on Jun 23^rd, 2003, 11:11am

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

Title: Re: CH - the Orphaned Orphan Disease
Post by cbolony on Jun 23^rd, 2003, 11:45am

e-mail sent

Title: Re: CH - the Orphaned Orphan Disease
Post by Live4Fun on Jun 23^rd, 2003, 1:35pm

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! >:(

Title: Re: CH - the Orphaned Orphan Disease
Post by Charlie on Jun 23^rd, 2003, 5:38pm

I got the reply too... >:(

http://www.smiliegenerator.de/s17/smilies-1911.png

Clusters to this idiot

Charlie