Virtual Support Group for Male Patients and Caregivers

Recently I met a lovely man named Dave Ross who has a rare disease called Cowden Syndrome. 2 years ago he set up a virtual support group for male patients and caregivers to help support the mental health side of living with a Rare Disease/Disorder. David has just set up additional meetings for...

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If Not Me, Who?

KEY POINTS In new research, adults with rare disorders discussed their key challenges and how they are combatting them. Lack of awareness among healthcare providers and the public leads to poor medical care and stigma. Many people with rare diseases take it upon themselves to engage in...

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