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

  • Mitch Sabine

    Head of Organisation

    Mitch Sabine is founder of PFS Network and organises the patient community including fundraising, awareness and volunteer efforts.

  • 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.

    Read Dr Urbanucci’s research.

    Watch Dr Urbanucci’s interview with us here.

  • 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.

    Read Dr Hornig’s research.

    Watch Dr Hornig’s interview with us here.

  • 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.

    Read Prof. Khera’s research.

  • 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.

    Read Prof. Schleutker’s research.

  • 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.

    Read Prof. Saarela’s research.

  • 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.

    Read Prof. Thorsby’s research.

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.