Dear all who are interested in seing PSSD being solved, I am a member of a PFS organization. During the last months I had been in touch with the Rare Disease Organization NORD. We were planing a patient registry with PFS and Finasteride patients. To learn how a registry can help solving a disase, pl...

Here is the podcast I was speaking on. Please spread the word: https://twitter.com/SimonBreidert/statu ... 24192?s=19

If you get tired, jump to the list 5 minutes!

Dear all,

I am in touch with an Irish scientist who is interested in doing research on PSSD and PFS.

He asked me if I knew anyone from Ireland.
He is new to the field so I guess he would like to meet up with a patient.
Please contact me if you know someone.

Thanks. I also thought if we make a small public fundraisung campaign. This could be something good for a public crowdfunding project. It would be a good thing to raise public awareness. I think some public grants for example from the EJP program or NIH could finance the project, but I think we need...

This wouldn't be a problem. Each disease could maintain its identity. It would allow cross-validation of aberrant biomarkers. Ideally, the registry would also be used for a certain amount of disease-relevant control groups, such as SSRI users, finasteride users, isotretinoin users. The ME/CFS commun...

Dear PSSD-Community, as some of You know we founded an organisation whose primary function should be to accelerate the speed of PFS, PSSD and PAS research. One of our friends in the US got in touch with NORD (National organisation of rare disorders) to discuss the opportunity to start a patients re...

The worldwide rare disease day is 28th of February 2021:
https://www.rarediseaseday.org/

Important opportunity to raise awareness for PSSD.

Very important point that increases awareness. b] I have several ideas and suggestions:[/b] 1) Google ad grant program If you register as a non-profit organization, you can apply for the Google ad grant, which should be easy to get. The Google ad grant amounts to $10,000 [/b] Google ad budget free o...

It's a great idea. People, including medical professionals, are ignorant that this exists. This is one reason why more resources (money, people, time, etc) aren't spent on fixing this. Also, it seems whenever the community learns anything, it tends to be quickly forgotten. For instance, I found som...

JLo22 wrote: ↑Mon Nov 16, 2020 2:08 pm How about involving Dr. Amy Pearlman who has been very proactive with her research at The University of Iowa.

Thanks a lot, I am in touch. She will participate in next month's roundtable