PSSD/PFS Patient Registry

General discussions. Feel free to use this like a support group also.
Firstprinciples
Posts: 11
Joined: Mon Sep 07, 2020 10:56 am
Contact:

PSSD/PFS Patient Registry

Unread post by Firstprinciples »

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, please watch the explainer video below.
Every bigger disease has a registry and it's an essential part of solving a disease.

My partner now transfered the task of building the registry to me. A registry is a lot of continuous work. I fear that without a collaboration this project might fail. Therfore I would like to as you as a community if you are interested in creating a joint PFS/PSSD registry? Which means a lot of work for both our commonties, but it might make success more likely.

For more information: https://youtu.be/EkJ3kCFQ34M

Cheers.
heymartinn
Posts: 35
Joined: Sat Nov 28, 2020 4:23 pm
Contact:

Re: PSSD/PFS Patient Registry

Unread post by heymartinn »

I can't speak for everyone at this group but I think that at this bleak moment we don't have the luxury to say no to arising opportunities and should capitalize on everything that has the potential to bring us closer to publicity and research of these diseases. It's definitely worth a shot.
Post Reply

Who is online

Users browsing this forum: Bing [Bot] and 6 guests