Hi Mellivora,
I don't believe that POIS is listed yet in the UK's rare disease database, and in all honesty, I am not sure if the UK specifically has its own formal list. They may, but I'm not sure.
There is an excellent international/European database called Orphanet (
www.orpha.net) that NORD relies upon often. I believe that they would be the group to contact about getting POIS listed formally. They have a specific UK page, and also a general page that lists and provides information for rare disorders that are recognized in the European Union and the UK.
Here's the general link to their UK page --
http://www.orpha.net/national/GB-EN/index/team-contact/. They provide this UK email address as a contact for potentially getting a disorder listed --
contact@ophanet.co.uk.
Also, just FYI, here's the link to
Orphanet's alphabetical listing of official rare ("orphan") diseases throughout the European Union and the UK --
http://www.orpha.net/consor/cgi-bin/Disease_Search_List.php?lng=EN&TAG=A.
It will take at least one email from you and/or anyone else from the forum who reside in the UK to make this happen.
When Demografx and Daveman contacted the NIH in the US, they sent an email asking how to get POIS officially listed, and also attached Dr. Waldinger's two papers from 2011 as back-up. The contact at NIH found, on her own and at her own initiative, some other studies -- I believe one was by Dr. Goldmeier. It was these preliminary studies, and knowing that there was a specific organization (
http://poiscenter.com) that convinced them to list POIS officially. It's listed as
Post Orgasmic Illness Syndrome (not POIS) at NIH.
While NORD has no influence over what disorders get listed at NIH or at Orphanet, you should feel free to mention that NORD suggested that you contact them. It's a small world in the rare disease community and we all know and respect each other.
There is strength in numbers when contacting these types of national organizations -- perhaps other forum members from the UK would want to sign the email along with you.
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.
Good luck with this, and I hope you get listed!!
Ophanet is a highly-respected database.
Hi Nordnurse,
Thanks for clearing that up. I was just surprised to see that POIS was on NORD's funding page but not on the information page. Make no mistake I'm very grateful for the existence of NORD, the help you have given us thus far and the huge potential for the future. Do you have any information about whether POIS is officially listed in the UK? I know there are UK researchers (Dr Goldmeier's team) working on it but I wonder if its on a national database. I know a couple of years ago, before the NIH listing, my GP coudn't find any reference on his database that supposedly covered every officially recognised illness. If its still not listed here, I wonder if there are steps I could take to get it listed in the same way Demo and Daveman did for the USA. I guess I could check with Dr Goldmeier next I see him.
Thanks again.
