February 13, 2023
Each year, World Rare Disease Day is celebrated on February 28th (or 29th in leap years)—the rarest day of the year. This is a global movement to raise awareness for people living with a rare disease, their families, and caregivers. This year, CAN invites you to celebrate with #RareCaregiverAnd.
Throughout February—with a special emphasis on February 28—CAN encourages family caregivers of loved ones living with a rare disease to celebrate the identities and passions that enrich their lives. These caregivers devote so much of their energy to day-to-day care that they tend to neglect their own physical and emotional health. That’s the message behind #RareCaregiverAnd.
Far too often, the role of family caregiver overshadows the identity of those caring for their loved ones. As family caregivers juggle their many responsibilities, they may lose sight of who they are beyond their role as caregiver. As you focus all your attention on caring for your child with Joubert syndrome, the fact that you’re an architect who loves to do crossword puzzles sometimes gets pushed to the side—and #RareCaregiverAnd aims to change that. Through #RareCaregiverAnd, CAN wants to highlight the identities, activities, and interests that make up the lives of rare caregivers. A person’s sense of self is an essential component of self-care that can ultimately prevent caregiver burnout and depression.
#RareCaregiverAnd can help caregivers of a loved one with a rare disease recognize that there is more to their life than their caregiving responsibilities. Hopefully, family caregivers will remember it’s important to celebrate who they are beyond caregiving. One’s sense of self makes their life complete.
Caregiver Action Network (CAN) (www.CaregiverAction.org) is the nation’s leading family caregiver organization working to improve the quality of life for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. CAN leads the way in elevating awareness, highlighting needs, and driving policy efforts to positively impact healthcare’s largest workforce – the family caregiver. CAN serves a broad spectrum of family caregivers ranging from the families of children with special needs, to the families and friends of wounded soldiers; from a neighborhood’s support of a young couple dealing with a diagnosis of MS, to adult children caring for parents with Alzheimer’s disease. CAN (the National Family Caregivers Association EIN 52-1780405) is a non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge.