“The Caregiver Community Action Network (CCAN) is a unique and highly dedicated group of over 100 volunteers in more than 40 states. Our CCAN volunteers reach out to family caregivers to provide education and support. They also teach caregivers to be advocates for themselves and their loved ones. “ You can join for free and get some much needed support! http://caregiveraction.org
They also have a web site dedicated to rare disease caregiving: http://www.rarecaregivers.org/
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