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Charity & advocacy

Celebrating a year of mental health support for men affected by rare conditions!

According to the Mental Health Foundation“In England, around one in eight men has a common mental health problem such as depression, anxiety, panic disorder or obsessive-compulsive disorder (OCD).” It is no secret that talking about mental health can be hard for men, “societal expectations and traditional gender roles play a role in why men are less likely to discuss or seek help for their mental health problems.” In the past, expressing emotion has been seen as a sign of male weakness, which has led men to internalising their emotions, leaving them suffering with mental health issues and in some cases taking their own lives: “Three times as many men as women die by suicide.” 

​Having a rare condition can place additional strain on a person’s mental health because of isolation, the lack of people’s understanding, the loss of traditional roles and the impact on relationships and employment. All of this creates a harmful burden for which men are less likely to reach out for support. ‘Living with a rare condition can have a huge impact, including anxiety, stress, low mood, emotional exhaustion and suicidal thoughts.’ 

The motivation behind David’s virtual meetings to support men’s mental health

​David Ross, rare disease mental health advocate, is passionate about helping men talk about their mental health. David understands personally how having a rare condition can impact mental health. He was diagnosed with Cowden Syndrome shortly after his mother, who also lived with the condition, sadly passed away from cancer.

​‘Cowden syndrome is an inherited condition that is characterised primarily by multiple, noncancerous growths (called hamartomas) on various parts of the body.’

​‘People who have Cowden syndrome are at an increased risk of developing certain types of cancer.’ Throughout his life David has struggled with his own mental health and wanted to do something to make sure others need not suffer alone. 

He had the idea to start a virtual meeting held on the last Sunday of every month where men from around the world could join him to talk about everything and anything important to them.

David explained his primary motivation of starting the group was that having never met his birth father he wanted like to “find the male role model from within” and help others in a similar situation. “I was aware of quite a few males who are suffering with mental health issues around the UK but unable to seek support or speak out because of our social conditioning. There are not many males talking about what they’re going through.” David reached out to Michael Mittelman, founder and CEO of The American Living Organ Donor Fund, who was interested in helping men talk about their mental health. “Michael believed in what I was saying and felt the same. It was amazing finding someone in America that was just as passionate.” David also reached out to Emmitt Henderson III, president at Male Lupus Warriors. With Michael and Emmitt on board, the three men began to support the male rare disease community. 

I was aware of quite a few males who are suffering with mental health issues around the UK but unable to seek support or speak out because of our social conditioning. There are not many males talking about what they’re going through. “

David Ross

The impact of the meetings.

The meetings have provided a safe and friendly space for men to talk openly without fear of judgement about things that are bothering them or just life in general. Some of the topics of conversation covered range from fatherhood to how a rare condition can impact romantic relationships. The meetings have given the men confidence to be able to talk openly, in a way some might not have ever done before. “It’s still a new group but it has been really successful; we have people from Russia, Pakistan, Malaysia, America and Europe.” As well as creating global connections and helping form friendships, the meetings have helped “in giving the guys a voice to talk about how they feel. Despite living in different countries and being from different cultures, we have more that unites us then separates us.”

“It’s still a new group but it has been really successful; we have people from Russia, Pakistan, Malaysia, America and Europe.”

David Ross

The past, present and future for men’s mental health

It is evident that there is a gap in terms of mental health support after a rare disease diagnosis. Healthcare professionals are there to primarily treat the physical impact of a condition; therefore, it is sometimes left to the individual to seek out help for the emotional impact of a diagnosis. David believes several changes are needed. The first is more awareness: there needs to be more support from those working in the rare disease field to enable conversations about mental health. The second is a cultural shift: we need to change our perspective and understand that having a mental health issue is something that needs to be acknowledged and cared for just as you would a physical issue. David highlighted the need for more funding to be put into counselling services and for charities to have more financial support for patients’ mental wellbeing. The third is more dedicated charities for mental health and rare conditions. David believes the work Rare Minds are doing is essential. He feels it would be beneficial if other charities were able to collaborate on tackling mental health.

David is passionate about setting up a nonprofit dedicated to supporting those living with rare conditions and mental health issues and is on a mission to make sure no man stands alone. 


If you would like to find out more information about the monthly meetings, please click the buttons below: 

If you or someone you know is finding life difficult and struggling to manage their mental health, please do not hesitate to reach out and get support:

UK based organisations: 

USA based organisations: 

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