Resources

Here is a list of resources that I have found helpful as a rare disease patient

Since my diagnosis as an adult with my rare disease I initially found it an isolating experience.

Connecting with people in my rare disease community brought me in contact with many amazing females who were speaking openly about their experiences as a rare disease patient or caregiver.

The men I connected with were suffering in silence, unable to speak out about what they were going through.

So I decided to set up the men’s group and with this website want to create resources for men and mental health. I think it is important to make all voices heard as no one should be forgotten about as living with a rare condition can be an isolating experience.

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Eurdordis article on rare disease men’s mental health- This article perfectly sums up the importance of men taking care of their mental health and gives an idea of what the men’s meetings are like.

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Rareminds website- I think they are doing great work with mental health for the rare disease community. Website has good resources and information.

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Al Freedman- Rare disease Phycologist . Experienced in the rare disease community. I have found Al a compassionate, dedicated man committed to supporting people impacted by rare diseases.

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