Patient-led advocacy for Post-Finasteride Syndrome
PFS Network is dedicated to furthering the visibility and understanding of the disease currently termed Post-Finasteride Syndrome.
We are a charity registered with The Australian Charities and Not-for-Profit Commission in Australia, and are a registered 501(c)(3) organisation in the United States. Our organisation is led by PFS patients who manage the largest online patient community. All of our projects are designed in consultation with a board of molecular biologists, geneticists and clinicians.
Key Figures & Advisors
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Mitch Sabine
Head of Organisation
Mitch Sabine is founder of PFS Network and organises the patient community including fundraising, awareness and volunteer efforts.
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Dr Alfonso Urbanucci
Lead Researcher & Advisory Board Member
Dr Urbanucci is a leading prostate cancer researcher, published in journals including Cell reports. Dr Urbanucci is an advisory board member for PFS Network and leading a genetics study into Post-Finasteride Syndrome.
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Dr Nadine Hornig
Lead Researcher & Advisory Board Member
Dr Hornig is an expert on the androgen receptor and has recently been published in Nature. She is an advisory board member and is leading an epigenetics investigation into PFS.
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Professor Mohit Khera
Advisory Board Member
Mohit Khera is a Professor of Urology at Baylor College of Medicine and the President of the Sexual Medicine Society of North America. Prof. Khera is a member of the advisory board and published findings of differential gene expression, as well as clinical findings, in PFS patients.
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Professor Johanna Schleutker
Advisory Board Member
Johanna Schleutker is a Professor of Medical Genetics at The University of Turku. She is an advisory board member and focuses her research on predisposing genetic factors for disease.
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Professor Janna Saarela
Advisory Board Member
Janna Saarela is a Professor of Medical Molecular Genetics and the Research Director, Institute for Molecular Medicine Finland. She is an advisory board member and an expert involved in many international scientific networks.
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Professor Per Thorsby
Advisory Board Member
Per Thorsby is a Professor of Endocrinology at The University of Oslo. He is an advisory board member and specialises in endocrinology and internal medicine.
Our objectives
Visibility
Serious and irreversible disease is occurring in some young people after as little as one dose of Finasteride.
We lead awareness efforts, including publishing video content, and engaging with doctors, scientists and news outlets.
Understanding
Improved clinical awareness of the characteristics and symptoms of Post-Finasteride Syndrome is urgently necessary.
We have unmatched insight into the clinical problem through the largest standardised self-reported dataset in the world.
Progress
Appropriate genetic, epigenetic and molecular level investigation of PFS patients will allow true clinical models and eventual therapies.
PFS Network funds meaningful research with specialists and centres at the forefront of relevant science.
Community
Created in 2006, propeciahelp is the largest community platform for PFS patients.
We provide this important resource for patients to connect and share experiences.
Patient posts on the discussion forum should not be considered accurate information or medical advice.
Bigger Picture
A similar syndrome is occurring in young patients who have used other antiandrogenic therapeutics.
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Our surveying of hundreds of patients reveals a remarkable overlap in these clinical problems.
Androgen signaling is critical in all symptomatic domains, making these converging pharmacodynamics significant.
Antiandrogenic substances frequently interact with the symptoms of Post-Finasteride patients and can cause further harm.
Pending pathomechanistic findings in PFS patients, we will support research involving Post-Serotonergic drug/Post-Accutane/Post-Saw Palmetto patients to evaluate the possibility of a single syndrome following endocrine disruption in a subpopulation.