Author Topic: NORD Research Grant  (Read 130831 times)

Daveman

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Re: NORD Research Grant
« Reply #105 on: September 26, 2011, 11:21:06 AM »
Excellent mellivora,

If we can help with follow up let us know!

Somewhere the right people will see us!
WITHOUT RESEARCH THERE WILL BE NO CURE!
Sessions 5 to 9 days, mostly Flu-like, joints, digestion problems, light cognitive.
Niacin has changed my lif though, now 1 day MAX.
Somewhere in this interaction with Niacin is the answer!

Willem

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Re: NORD Research Grant
« Reply #106 on: September 26, 2011, 12:07:34 PM »
Way to go Mellivora!  That's great.

mellivora

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Re: NORD Research Grant
« Reply #107 on: September 26, 2011, 05:20:11 PM »
I received a quick reply from Orphanet. Our request to be listed in their database has been forwarded to their experts in rare diseases. There are many validation steps in the process so I've been told it could take a few months for them to reach a decision on the listing. (Indeed it took a few months for POIS to be included on the National Institute of Health's Office of Rare Diseases Research list in the USA). A big thanks from all of us should go to nordnurse for her advice in getting this process underway.
« Last Edit: September 26, 2011, 05:21:52 PM by mellivora »

Ccconfucius

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Re: NORD Research Grant
« Reply #108 on: September 26, 2011, 10:31:36 PM »
NICE

Stef

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Re: NORD Research Grant
« Reply #109 on: September 27, 2011, 01:04:50 PM »
Sounds perfect, Mel.

Also, thank you for sharing the contents of your original email to Orphanet with me (you might have shared with with Demografx and Daveman also -- don't recall off-hand). It was written beautifully and very convincingly.

Just to repeat to your fellow forum members:

"It would also be helpful for other international forum members to contact Orphanet about getting officially listed. At the bottom of their homepage -- http://www.orpha.net/consor/cgi-bin/index.php?lng=EN -- there's a list of participating countries with contact information.  This link is their site in English, but it is also translated into five or six other languages."

The more contacts made, the stronger the chances of getting officially listed on this European database. 


Good luck with this, and I hope you get listed!! Ophanet is a highly-respected database.


I have written to Orphanet today asking for POIS to be listed. I attached to my email the 3 papers by Dr Waldinger, the one by Dr Ashby and Dr Goldmeier and the Nature Review by Dr Farley. I also mentioned NORD, the NIH database listing, sent the address of both POIS forums and gave them contact details for Dr Waldinger and Dr Goldmeier.  I'll post an update here as and when there's any progress.

demografx

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Re: NORD Research Grant
« Reply #110 on: January 01, 2012, 11:44:07 PM »



OUR POIS MEDICAL RESEARCH FUND




We've got to start somewhere!
What is the alternative?

Click here to Donate Now!



$mall or large$ - it's ALL important, crucial, and needed!



*******************************************************************************



Together we can figure out The POIS Puzzle!!


"Hey, what's all this fuss about POIS Fund-donating????"


Click Here to learn more about how YOU can help find YOUR cure for POIS:





« Last Edit: January 18, 2012, 11:47:43 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: NORD Research Grant
« Reply #111 on: January 01, 2012, 11:58:31 PM »




POIS Medical Research Fund Total:  $4,730.00

($21,430 including pledges! Pledge now if you can't give now!)

AND RISING.


***********************************************




Great going, guys!!!


*************************************************

                


GOAL: $33,500.00.       Let's do this in 2012!!
« Last Edit: January 19, 2012, 12:11:59 AM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

mellivora

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Re: NORD Research Grant
« Reply #112 on: January 10, 2012, 10:07:49 AM »
Hi all,

As I posted on this thread a few months ago, encouraged by nordnurse I wrote to Orphanet, the European database of rare diseases in an effort to get POIS included in their database. I've made several follow-ups since then and today we finally have some good news!!

Orphanet now list POIS on their website!!! Daveman and Demo got us listed in the National Institutes for Health Office of Rare Diseases Research database in the U.S. and now we have similar recognition in Europe through Orphanet. Hopefully this will prove a great step in getting POIS to be more acknowledged and recognised by medical professionals and helps give us more credibility than ever.

The listing at this stage is not a huge amount more than the name of our condition. In time, a summary and more details of our condition should appear on the database. Here is a quote from the email I received from Orphanet:

"The summary addition is a complicated process due to the many accuracy controls and it will take time, however, the addition of POIS on Orphanet is the most important part."

The orphanet listing can be seen here:
http://www.orpha.net/consor/cgi-bin/Disease_Search.php?lng=EN&data_id=20421&Disease_Disease_Search_diseaseGroup=pois&Disease_Disease_Search_diseaseType=Pat&Disease%28s%29/group%20of%20diseases=Postorgasmic-illness-syndrome--POIS-&title=Postorgasmic-illness-syndrome--POIS-&search=Disease_Search_Simple

I'd like to emphasise that this would not have happened were it not for the advice and encouragement I received from nordnurse. It probably wouldn't have come about if Daveman and Demo hadn't taken the initiative and got us listed in the U.S. either as its that that set me thinking about European databases. And of course it wouldn't have happened without our forums! Our listing on Orphanet is further proof that everyone here can make a difference.
« Last Edit: January 10, 2012, 10:39:39 AM by mellivora »

mellivora

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Re: NORD Research Grant
« Reply #113 on: January 10, 2012, 10:24:22 AM »
It's interesting in the Orphanet listing that they list 3 "expert centres" in Germany under health care resources for this disease. It could be that these represent some of the people they consulted in verifying the existence of POIS, I'm not sure. It might be worth our while knowing more about this and I'll ask. I notice 'patient organisations' doesn't list our forums at present. I certainly made them aware of our forums in my original letter and I'll query this at some point.

Ah, just found this info about "expert centres"
http://www.orpha.net/consor/cgi-bin/Clinics.php?lng=EN
« Last Edit: January 10, 2012, 10:50:31 AM by mellivora »

Daveman

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Re: NORD Research Grant
« Reply #114 on: January 10, 2012, 11:23:44 AM »
It's interesting in the Orphanet listing that they list 3 "expert centres" in Germany under health care resources for this disease. It could be that these represent some of the people they consulted in verifying the existence of POIS, I'm not sure. It might be worth our while knowing more about this and I'll ask. I notice 'patient organisations' doesn't list our forums at present. I certainly made them aware of our forums in my original letter and I'll query this at some point.

Ah, just found this info about "expert centres"
http://www.orpha.net/consor/cgi-bin/Clinics.php?lng=EN

Thank you very much Mellivora. With people like you we have much more chance to overcome this condition.

It's not going to go away by itself!

I looked at the three "expert centers" and it looks like they treat in the "area", urology for instance, but I didn't see anything specific about POIS.

We'll have to work at updating our information there, but the biggest step has been made.

Thanks again.

WITHOUT RESEARCH THERE WILL BE NO CURE!
Sessions 5 to 9 days, mostly Flu-like, joints, digestion problems, light cognitive.
Niacin has changed my lif though, now 1 day MAX.
Somewhere in this interaction with Niacin is the answer!

Stef

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Re: NORD Research Grant
« Reply #115 on: January 10, 2012, 12:16:18 PM »
Mellivora,

WONDERFUL, OUTSTANDING NEWS!!!!!!

YOU are such a terrific asset to your group!! 

ORPHANET is the big leagues database for rare disorders in Europe and the UK.  We rely upon this database frequently.

Congratulations on a job terrifically done!

(I wish I knew how to insert an applause gif!!)

Stefanie
aka "nordnurse"

demografx

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Re: NORD Research Grant
« Reply #116 on: January 12, 2012, 04:18:12 PM »




             As most everyone knows by now, a wonderful anononymous POIS donor found his way to us and has committed! - not only pledged - $500/month - each and every month! - to the Research Fund!

Thank you for this most generous, courageous, and magnificent Ongoing Donation to our future!

daveman
demografx



10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: NORD Research Grant
« Reply #117 on: January 21, 2012, 11:38:51 AM »

I don't want to wait until late 2013 or 2014 before we can get dedicated (NORD-funded) POIS research under way. At the moment, that is the best we are heading for. 
We've got 2 months to get to our NORD target this year and save ourselves from waiting this long.

We've had some very generous donations recently but some of these are to be made over a period of months. I'm certainly no less grateful to the donors for this fact but it does mean the current NORD pledge tally can be misleading as it uses the total that will be donated by 2013, not by March this year. We are still currently not in a good position to make the March deadline this year. To me it looks like we're half way at best.

After we reach our $33500 target, it'll likely be some months before a researcher is appointed to work on POIS through NORD. It may be some time after this that work finally begins. I believe I'm right in saying that we really need to make the March 2012 deadline (2 months time) if we're going to see any benefits from NORD funded research within the next two years. There isn't a quick fix. But it'll be quicker if we begin now. Also, things will cost more in years to come. $33500 might not be the minimum required in future years, it might be more.

 We have some things that help some of us (eg. Niacin, immunotherapy) at the moment. But these are not cures so far or 100% effective treatments. And we still don't know what causes POIS. We have much better theories than we used to and even evidence for some of them but all POIS sufferers are not the same and what works for some doesn't work for others. We need to push this if we're going to help everyone. We need to know what POIS is, what causes it, what varieties of POIS there are and use this to  get as close as possible to being cured/ being POIS-free. For us and for future sufferers.

2 months is all we have. So far I have pledged $500. On the condition that we make the March 2012 deadline, I'm upping my pledge to $1500 (seriously, no clappy applause gifs for this please, lets just get that total)


« Last Edit: January 19, 2020, 05:48:44 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Ccconfucius

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Re: NORD Research Grant
« Reply #118 on: January 29, 2012, 04:00:59 PM »
I just wrote rough draft of donation letter request to send to companies. I  just want a generic way to put in letter to tell  company how theywill benefit from donatiing for our cause, or what we will do for them if they donate.

Ccconfucius

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Re: NORD Research Grant
« Reply #119 on: January 29, 2012, 04:43:03 PM »
Nordnurse, is there something as to big of a company when asking for donations.