Caring for Rare Disease Caregivers

A Guide for Family Caregivers of Loved Ones with Rare Diseases

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    Family Matters

    If family caregiving came with an instruction manual, it would need a whole chapter devoted to “family issues.” Caregiving affects the entire family. It can fundamentally change the family dynamic in inescapable ways. With so much of your attention focused on caring for your loved one’s condition, your responsibilities as a caregiver can change your relationship with your spouse, your other children, or other family members. And if the rare disease is a genetic disease, there may be more than one family member affected by the disease.

    Family Matters
    Effective Communication Strategies
    Talking to my Loved One About the Disease
    How Does a Family Meeting Work?

    How To Hold Onto Intimacy

    ...When Caring for Your Spouse
    ...When Caring For Your Child
    Caregiver Voices
    Blogs, Videos and Voices of
    Rare Disease Caregivers
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    © 2020 by Caregiver Action Network. Created with support from Genzyme.