Unfortunately, many doctors do not answer my emails
That is normal.
https://www.reddit.com/r/POIS/comments/1act60i/heres_some_information_i_compiled_over_a_couple/
They are diagnosing and treating POIS according to their own website. Located in Bonn, Germany.
https://www.ukbonn.de/andrologie-maennerkunde/#ablauf-der-behandlung
Why is this not on the list yet? Have you seen the website Quantum?
Contacted, no answer.
I prefer not to include a doctor on the list if I did not have explicit consent.
Even then, I already had a doctor who gave explicit content, and then, years later, told a member that she never asked to be on th list and was not involved in POIS anymore. So, for now, this mention in the list's thread will do, for this doctor.
Since I do not have much time for that currently, and that you seem very good at spotting potential POIS Doctors, feel free, Muon, to contact this doctor or any other doctor. Ask them if they give their consent to be on the list, and what contact information they want to appear on the list. That would be very helping. If you have any positive answer, forward thier email to me !
In case this could be of any help for you, here is an example of the emails I use to contact them:
"Dear Dr. XXXXXXXX,
I am a member of one the largest information and support forum for POIS, created in 2011, which currently has over 1500 members worldwide (
https://poiscenter.com/).
One of our members shared the link to your POIS ^***case report/article/survey/***. I am glad that you are interested in POIS, which is not very well known, even by doctors. We are very thankful for your interest in our rare syndrome, and your efforts to make it known.
I wanted to let you know that our forum is always willing to help any researcher who wants to go ahead with a POIS project or a POIS study. In particular, we can help with subjects recruitment, which is not easy in the case of a rare syndrome. If you or another health professional you know would like our help in finding POIS subjects, do not hesitate to contact the forum adminnistrators team.
Also, since not that many specialists and doctors know about POIS, we maintain for our members, on our site, a list of doctors who know about POIS, are interested in POIS research and/or have already published an article on POIS, and are seeing POIS patients. You can see the current list at
https://poiscenter.com/forums/index.php?topic=2575.msg22338#msg22338 . If you see POIS patients and would like to appear on this list, it will be my pleasure to add you. If so, just send me the contact information you would like to see appear for you on this list.
As a final note, our forum gathered enough money to fund a POIS study, through a grant awarded and managed by the National Organization for Rare Disorders ( NORD). The study was supposed to start last year, but was postponed due to the pandemic. Hopefully, it will start in the coming months.
Again, thank you for your interest in POIS research,
Best Regards,
"
If any other member wants to help and contact a potential POIS Doctor, please forward to me any positive emailed answer.
