As a caregiver for a loved one with a rare disease, you devote so much of your energy and passion to day-to-day care that you may often neglect your own physical and emotional health. As rare caregivers, you have many needs related to the medical care of your children, spouses, and siblings. You may have unmet needs related to social support and self-care and experience feelings of isolation.

 

Caregivers like you are often well connected to many excellent rare disease organizations that provide valuable information regarding medical needs, current research, and other disease-specific resources. However, you may lack information related to your needs as a family caregiver.

 

That’s where Caregiver Action Network (CAN) can help. CAN is the nation’s leading non-profit family caregiving organization. You can come to CAN for help and resources, to learn to be a better caregiver for your loved one and to learn to take care of yourself. CAN’s information and support dedicated to helping family caregivers like you include:

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• Family Caregiver Toolbox

• 10 Tips for Family Caregivers

• Caregiver Help Desk

• Online Care Community

• Video Resource Center