Living with a rare disease or caring for a loved one with a rare disease can be a socially isolating experience. People with rare conditions, their families and caregivers may 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).
After the recent pandemic, we have seen a much 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 impacted during stressful times.
In response, the Rare Disease Foundation, in partnership with REACH Trauma Response Consulting and BC Children’s Hospital Foundation, supports our community by connecting rare families from across Canada with specially trained mental health providers for individual online counselling sessions at a significantly reduced rate.
Check back here in a little while as we plan to restart this program soon (Nov/Dec 2025 launch).
