RARE RESOURCES Know Rare Team RARE RESOURCES Know Rare Team

Healthy for the Holidays

The holiday season is just around the corner, and for many, this time brings joy and connection; however, if you are navigating the diagnosis of a rare disease, the holidays can be stressful and challenging. Here are our five ways to protect your emotional health during the busy holiday season.

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RARE RESOURCES Evelyn Leigh RARE RESOURCES Evelyn Leigh

The Toll of Rare Disease on Mental Health and What Can Be Done About It

When it comes to mental health, rare disease can put you on shaky ground. You’ve likely faced years of uncertainty just waiting for a diagnosis. Not knowing what is wrong or what to expect in the future is scary and unsettling. Because little is known about many rare diseases, there may be no one to turn to for answers. No wonder stress is the main culprit affecting mental health for people with rare diseases.

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Craig Delarge Craig Delarge

Understanding Ambiguous Loss: Navigating Uncertainty in Rare Diseases

Ambiguous Loss is unique in that people facing this kind of loss are denied traditional closure rituals and acknowledgements, like memorials and respite periods, as well as typical social support and bereaved status. They are expected to carry on as usual, and may be stigmatized when they do not.

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