Dear fellow patients,
PFS Network is pleased to announce new resources that are available to support PFS patients, their families and friends.
These resources will be especially valuable for new patients seeking accurate and reliable information about Post-Finasteride Syndrome, and families needing support.
PFS Network webinars
Our new quarterly webinar series gives patients and families the opportunity to hear first hand from PFS Network about important updates and research progress, have your questions answered and meet with other patients and families.
Moving forward, we’ll also tackle common challenges or questions to provide better support and build a more cohesive community. Anyone is welcome to join and the first webinar will take place on March 24th. Two sessions are available: one in the North American time zone and one in Europe/UK.
If you would like to attend, please register your interest here.
Family Group
Families and loved ones are an integral part of our community, and essential to our long-term objectives of advancing understanding and awareness. We understand that families and loved ones also need support, resources and connection to navigate this difficult journey.
Our new Family Group is launching this week, and any family member or loved one is invited to join. They can learn how to cope, find support and connect with others, and get involved with our efforts by volunteering. If you think your family or friends would be interested, please invite them to register their interest here and we’ll add them to the group.
Family information pack
Having support from family and friends is important for men experiencing PFS and can have a noticeable impact on their emotional wellbeing. Denial or dismissal of PFS can lead to further distress and rupture support networks.
Unfortunately, due to the poorly understood nature of PFS, explaining the condition can be difficult. Providing a concise, digestible overview of PFS and the challenges patients face is challenging, and sadly families and friends often stumble upon misinformation online which influences their early beliefs about the disease.
Our new information pack for families aims to address this problem.
Rather than explaining everything about PFS, patients can simply describe their personal situation, then provide their loved ones with this presentation. It provides an overview of PFS, a simplified explanation of the published research and scientific concepts involved, and addresses many of the mistruths they may encounter elsewhere online. We hope this resource will be particularly valuable and help families avoid misinformation which is common online.
New FAQs article
In our latest blog, we’ve drawn upon 15 years of patient self-reports and scientific literature to help answer the most frequently asked questions from new patients and families.
While our recent “Six most commonly asked questions about PFS” article was aimed at a general audience, including men considering taking finasteride, this latest blog is dedicated specifically to new patients and their families. It explains the differences between on-drug side effects and PFS, what patients should do when first experiencing the disease, and addresses common questions about scientific research.
All these resources are now available on our new Patients and Families page. We will be promoting them heavily over social media in the coming months as we continue to step up our efforts.
New user guide updates
You may have noticed overnight that the new user guide has been given a facelift. It now includes many of these resources and is pinned to the top of major categories on propeciahelp. We encourage older members to please direct new patients to this resource when they join. It addresses many of their questions and will help them navigate the forum and issue of PFS more efficiently.
We are also planning some updates to the forum layout and user experience in the coming weeks which will hopefully make it easier to navigate.
Upcoming research
In case you missed it, we announced two weeks ago that our upcoming study at The Institute for Human Genetics in Germany has reached it’s fundraising target. We are deeply appreciative for all your support.
Our focus now is on the logistics of organising samples, and we will continue to provide updates as they are available.
We have set a new fundraising target of €200,000 annually, and the team at PFS Network have already contributed €10,000 towards this goal.
As always, any support you are able to provide makes a huge difference.
With gratitude,
The PFS Network team
