Why mental health is a core part of the rare disease experience: listening to the patient voice

https://rarerevolutionmagazine.com/why-mental-health-is-a-core-part-of-the-rare-disease-experience-listening-to-the-patient-voice/ Often dealt with as an aside, mental health can be as significant as physical health, for both rare disease patients and caregivers. A recent survey by Rare Patient Voice highlights the effects of rare disease on mental health and the impact on all aspects of life when a patient and caregiver’s emotional wellbeing is not addressed and supported For people living with rare diseases, and for the family caregivers who support them, mental health is not separate from physical health. It is part of everyday life. It affects how people cope, how they make decisions and how they manage the long and often uncertain journey of rare disease.