Living with a rare disease and caring for a loved one with a rare disease is a socially isolating experience. Rare disease patients, their families and caregivers struggle with mental health issues, social isolation and financial burdens. According to a survey conducted by the Canadian Organization for Rare Disorders (CORD), almost 80% of rare disease caregivers suffer from mental health concerns as a result of their caregiving responsibilities (CORD, 2019).
During and after the current COVID-19 pandemic, we can expect a higher incidence of depression, anxiety and trauma related conditions, including Post Traumatic Stress Disorder (PTSD). The rare disease community is a vulnerable population and we anticipate they will be more acutely impacted during and after the pandemic.
The Rare Disease Foundation is preparing to support our community through this global crisis and beyond by connecting rare disease community members with mental health providers for individual online counselling sessions at a significantly reduced rate.
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