I was diagnosed with my rare disease which is called Cowden Syndrome in 2017. I quickly became aware of many amazing female advocates talking about their rare disease experiences but hardly any men.

The men that I connected with were suffering in silence unable to speak out / seek support about their mental health.

In 2020 I decided to set up an online men's group for male patients and caregivers in the rare disease community around the world. I felt this was something that was definitely needed as there are added layers that come with a rare condition. Living with a rare disease can also be an isolating experience and no one should be left alone and unheard.

Meetings are held two times a month and I have had men attend from 6 different continents attend, proving that despite different countries, cultures and social classes men have more in common with the emotional mental health side of being impacted by a rare condition.

Meetings range from having male speakers share their story, various topics to also open discussion,