Caring for Rare Disease Caregivers
A Guide for Family Caregivers of Loved Ones with Rare Diseases
About CAN
The Caregiver Action Network is the nation’s leading family caregiver organization working to improve the quality of life for the than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. CAN serves a broad spectrum of family caregivers ranging from the parents of children with special needs, to the families and friends of wounded soldiers; from a young couple dealing with a diagnosis of MS, to adult children caring for parents with Alzheimer’s disease. CAN (formerly the National Family Caregivers Association) is a non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge.
Our Rare Disease Caregiver Advisors
Rhonda Buyers
Executive Director, National Gaucher Foundation (US)
Davor Duboka
Executive Director, NORBS (National Organization of Rare Diseases Serbia)
Toni Mathieson
Executive Director, Niemann-Pick Disease Group (UK) and Board Member, International Niemann-Pick Disease Alliance
David Pena
President, Pide un Deseo (Mexico)
Scott Radabaugh
Patient and Parent, The FH Foundation (US)
Our Mission
The mission of the Caregiver Action Network (CAN) is to promote resourcefulness and respect for the more than 90 million family caregivers across the country.
Our Goals
Create Resourceful Caregivers
Serve an increasing number of family caregivers with practical help, support and information.
Reduce Caregiver Stress
Improve the quality of life for family caregivers by reducing their day-to-day stress and financial distress.
Create Respect for Family Caregivers
Advance the case for family caregiver recognition and support.
Create Capable Caregivers
Build family caregiver confidence and capability through the dissemination of educational programs that demonstrate a positive impact on the lives of family caregivers.