Tag Archive for "rare" - Health Stories Project

Life with a Rare Condition: The Ups, Downs, and In-betweens

When most people find out someone is living with a rare health condition, their first thought is just how hard it must be for that person to carry on every day, facing their diagnosis. But for many who have a rare condition, the…
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chronic fatigue syndrome, Guillian Barre syndrome, hypoparathyroidism, narcolepsy, paraganglioma cancer, POTS, rare, rare disease, Retinal Vasculitis, sarcoidosis, schwannomatosis, Stiff Person Syndrome, superior mesentric artery syndrome, Von Willebrand's disorder

Family and Caregiving

What parents and caregivers would like others to know about supporting someone with a rare health condition

Caring for someone with any chronic health condition is an experience that is hard to relate to unless you’re going through it. Resources and support for caregivers are often hard to come by, friends and family don’t often understand, and treatment can be…
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caregiver, parenting, rare, rare disease, spouse

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