Honoring Those Caring for a Loved One with a Rare Disease

Caregiver is Caring for a Loved One with a Rare Disease

February 13, 2023

Individuals around the world celebrate World Rare Disease Day annually on February 28th (or 29th in leap years). It recognizes the rarest day of the year, highlighting global awareness and support for rare diseases. 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, CAN encourages family caregivers to celebrate their loved ones with rare diseases. There is a special emphasis on February 28 to honor their identities and passions. These caregivers devote much of their energy to day-to-day care. As a result, they often neglect their own physical and emotional health. That’s the message behind #RareCaregiverAnd.

#RareCaregiverAnd: Celebrating Rare Caregivers’ Diverse Identities

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 caregivers. Devoting all your attention to caring for your child with Joubert syndrome may sideline your interests. For example, your passion for architecture might not receive as much focus. Sometimes, hobbies such as doing crossword puzzles take a back seat. #RareCaregiverAnd aims to shift this focus and recognize caregivers’ diverse identities and passions. 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 helps caregivers of loved ones with rare diseases. It helps them recognize that there is more to their life than 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.

More information on rare diseases can be accessed here. Be sure to follow and like CAN on Facebook, and Instagram.

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About CAN:

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, diseases, or the frailties of old age. Caregiving is a crucial and often underappreciated role that affects millions of families across the United States. The National Family Caregivers Association (CAN) advocates for the needs and well-being of family caregivers.

CAN, a non-profit organization, supports this essential workforce. Its mission focuses on ensuring family caregivers receive the support and recognition they deserve. CAN serves a diverse range of caregiving situations, including children with special needs and adults managing chronic illnesses. They aim to elevate awareness about caregiving issues. CAN also drives policy efforts to positively impact the lives of family caregivers. They offer peer support to help caregivers navigate their roles effectively. Recognizing the essential contributions of family caregivers, CAN’s work is instrumental in ensuring they receive the support and recognition they deserve.