What we do

Providing men with a space to connect, share experiences, and talk about their mental health

Our purpose

The purpose of the group is to help break the stigma around male mental health and to encourage men to take care of their emotional well-being .

  • It provides rare disease patients and caregivers with a safe space to talk about their experiences, get support and listen to other peoples stories.

  • Having a rare disease comes with many added layers which can impact your life such as physical, medical, emotional, relationships and bereavement so it is important to talk about your emotional and mental well-being.

  • Through awareness and education, men have come together in this format, forming a supportive community where they can connect and support one another, despite their differing conditions.

xxx,
Regular group member

I feel the group is needed because we are all on a mental health continuum

…which ranges from being able to cope, enjoy, and function in life, to being in a position where you are struggling to manage life and, in some cases, being diagnosed with a mental health condition. I think this is particularly important to understand for rare disease patients and caregivers as a diagnosed mental health comorbidity exacerbates existing challenges to your mental health such as fatigue, anxiety, feeling withdrawn, or anger.

Get involved

We hold Zoom meetings every last Sunday of the month, for an hour. People have attended from around the world, from South America, North America, Europe, Africa, New Zealand, and Asia.

During our meetings, we engage in discussions about various open topics and also host speakers on occasion. Our conversations encompass a wide range of topics, including rare relationships, shame, bereavement, being a rare parent, and the psychological impact of a rare disease.

Jim Freely,
Regular group member

It’s a chance for me to discuss matters with other people who have an idea as to what’s happening in our lives.

Resources

I’ve produced a 13-minute film about men’s mental health while living with a rare disease, highlighting the conversations that occur during our support group meetings.

The meetings are invitational where men can share what they are comfortable with. It is a chance to connect with others who are going through similar experiences .