Caring for Rare Disease Caregivers

A Guide for Family Caregivers of Loved Ones with Rare Diseases

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    Caregiving Information You Can Use Now!

      

    As a family caregiver of a love one with a rare disease, you can feel overwhelmed and hardly know where to start. That’s not surprising.  Caregivers in the rare disease community face some exceptional hurdles.  Rare disease caregivers often face a higher burden of very intense caregiving activities. You may even have faced the special challenge of having to be the one to educate your medical providers and others about the rare disease itself. So you need information, education and tools that can help you manage the many daunting tasks you face!

    Links 
    10 Tips for Family Caregivers
    Communicating Effectively with Healthcare Professionals
    Safe and Sound: How to Prevent Medication Mishaps
    Caregiving Right Now
    Learning to Think Like a Care Manager
    Patient File Checklist
    Going to The Doctor
    Medication List
    How to Communicate Symptoms​
    Crisis Symptom Reporting Guide
    Technology Can Help Caregivers

    When Keeping Your Loved One at Home Means Bringing In Help

    What Is Home Care?
    Getting Started with Home Care
    Questions for Home Care Providers

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    © 2020 by Caregiver Action Network. Created with support from Genzyme.