#RareCaregiverAnd: Honoring Those Caring for a Loved One with a Rare Disease
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.
“We believe that #RareCaregiverAnd will help caregivers of a loved one with a rare disease recognize that there is more to their life than their caregiving responsibilities,” said John Schall, CAN CEO. “We hope that family caregivers will remember it’s important to celebrate who they are beyond caregiving. One’s sense of self makes their life complete."
“The Janssen Pharmaceutical Companies of Johnson & Johnson is proud to support CAN’s #RareCaregiverAnd campaign to raise awareness of rare diseases and to celebrate caregivers who consider it a privilege to care for someone they love. We recognize the vital role caregivers provide in improving health outcomes for their loved ones,” said Stephanie Duffy, Global Director of Patient Advocacy and Engagement, Janssen Global Services, LLC. “This campaign acknowledges that, while being a caregiver is an important part of who a person is, it should not minimize everything else that makes a person who they are.”
Caregiver Action Network (www.CaregiverAction.org) is the nation’s leading family caregiver organization working to improve the quality of life for more 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 significant health 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 reaches caregivers on multiple platforms. CAN (the National Family Caregivers Association) is a 501(c)(3) non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge.