US Department of Health and Human Services Recognizes POIS as a Rare Disease

[Samir]

I was recently searching for this forum link again since I hadn't visited in quite a while and ran across this link to POIS on the official US Dept of Health website:
https://rarediseases.info.nih.gov/gard/10809/postorgasmic-illness-syndrome/resources/1

It seems like more attention is coming to our plight every day.

[demografx]

I was recently searching for this forum link again since I hadn't visited in quite a while and ran across this link to POIS on the official US Dept of Health website:
https://rarediseases.info.nih.gov/gard/10809/postorgasmic-illness-syndrome/resources/1

It seems like more attention is coming to our plight every day.

That listing was placed there largely with the aid of our Administrator, Stef.

[Stef]

Hi Samir (and Everyone!),

The link you've posted is from the National Institute for Health (NIH) section on rare disorders. I only provided demo & Daveman some direction on contacting the appropriate persons there to have POIS formally listed -- but they did all the work!

Shortly afterwards, your fellow forum-member, Mellivora (I believe he's from the UK) made contact with the European version of the rare disease section at NIH -- Orphanet. They include all the countries of the European Union. The link to the EURORDIS reference on POIS is http://tinyurl.com/zahcdu9.

Mel did all the work re: the EURORDIS listing -- single-handedly!

It's so important to be included on these international rare disorder sites.

When Dr. Komisaruk's study is completed and he then publishes his paper -- your (the forum's) study will be added as the most recent scientific reference to those sites.

Progress!


Stef

[demografx]

Thanks, Stef!

[demografx]

Historical (2011) FYI!

ANOTHER MAJOR MILESTONE HAS BEEN ACHIEVED

FOR POIS!

Dear Friends,

We are thrilled to announce that POIS is now officially recognized by the
National Institutes for Health (NIH), Office of Rare Diseases Research, in the US!!

Go to: http://rarediseases.info.nih.gov/RareDiseaseList.aspx?StartsWith=P, then scroll down until you reach Postorgasmic illness syndrome.

NIH maintains THE LIST of the almost 7,000 rare disorders that have been identified to date.  Getting POIS added to that list brings us one step closer to diagnosis, finding the cause, and most importantly – finding the treatments that will alleviate the miserable condition! 

With strong encouragement and support from NORD, we approached the Office of Rare Disease Research (ORDR) via emails, citing the few studies about POIS to date. We were met with immediate understanding and compassion, and after several weeks, they concluded that it was correct to list POIS on their official list of rare diseases.

Some of you might think that this is only a list – but we know from NORD that this particular list is frequently used by scientists, universities, pharmaceutical companies, and even venture capitalalists who are seeking to either obtain funding – or to fund – rare disease research.

We are slowly but surely making progress.  The time for serious attention to POIS has arrived!

Don’t forget, your donations are happily received at:
https://rarediseases.org/about/support/research-donations/fg_base_view_p3

With these donations, professional investigators will work at puting all the pieces together and get rid of this thing for once and for all!!

POIS Forums,
Demografx, Daveman