Family Impact
Everyone faces ups and downs in life, including carers. Caring brings extra emotional, physical, time, and financial demands for the whole family. Living with a rare condition can change daily routines, family roles, and future hopes, and plans. It can be tiring and confusing to find your way through health and care systems. Many families go through long periods of stress, uncertainty, and feeling alone.
Kerry Longmore - Impact of 'rare care' on the family
Sandra CampbellImpact of 'rare care' on the family
Cindy McKnightImpact of 'rare care' on the family
Stronger Together in Caring
Caring may be performed by one person or by a large family working to support each other. Many families find strength they didn’t know they had. Caring can bring people closer and help build deep bonds, hope, and courage.
This website was made with carers to offer support, useful information, and a sense of community. We hope you find resources that help you and your family feel stronger and more confident in your caring role. You are not alone.
Share Your Rare Story
Every caregiving journey is unique and your story matters. Whether you’re a family member, friend, or professional supporting someone with a rare disease, we invite you to share your experiences. Your story could offer comfort, insight, or hope to others walking a similar path.
Submit Your Story
