Round-up of 2019 – We Got Good Work Done Together

Round-up of 2019 – We Got Good Work Done Together

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2019 was an important year for and our forum contributors. Here’s a quick round-up of our three key achievements:

Relaunch of

We’ve gone from a website largely dormant and with low use of the forum – to a revamped website, growing community, actively engaged in several projects. This was a big achievement and we’re thankful to everyone coming to the forum for support, project participation, and giving back to one another.

Importantly, we are now open to patients affected by endocrine-disrupting medications beyond finasteride. We welcome patients experiencing lasting side effects from Accutane, anti-depressants, Lupron, and saw palmetto. Sign up to our forum here.

250+ patient surveys, providing a wealth of data points on our condition

This is an outstanding achievement and by some distance the biggest project we’ve run so far. The survey is comprised of several scientifically-validated instruments, probably the first of its kind assembled by patients studying a condition. Anyone who took the survey has played a big part in providing data for scientific research. We are also thankful to the scientists and researchers who helped us out.

The project will continue for the foreseeable future – but the results we have right now are immediately useful – and they are already garnering interest from scientists and researchers.

Assemble a core team steadily working on our objectives

We assembled a team of administrators and forum moderators to help run our site here at This has meant we’ve been able to keep the site ticking over whilst freeing up the time for members with specialist skills to focus on certain projects. We all want to crush this condition – and we’re contributing everything we can.

Action Outside of Propeciahelp

A major revelation in the later part of 2019 was the story from Reuters – on Merck’s alleged understatement of Propecia’s side effects during key clinical trials. Specifically, the number of patients who developed sexual symptoms whilst on Propecia – and how long those symptoms lasted after treatment. Other documents show that Merck knew two decades ago that Propecia sales would be hit if consumers learned of its potential impact on their health. The Reuters investigation is ongoing and we look forward to further excellent journalism.

February brings a review of Accutane/isotretinoin in the UK, through the Medicines Healthcare products Regulatory Agency. The focus includes sexual disorders and the MHRA’s expert working group are willing to meet with patients anonymously to hear about their situation. We would encourage any UK patients to contact the MHRA urgently to get involved. The panel is due to convene in February, so it’s important you email them now: and

We are excited for a big 2020 and look forward to working on more game-changing projects with you all.