Voice of the Raregivers™
Sponsored Caregiver Program
What is the Voice of the Raregivers™ and how has it helped Alexander Disease caregivers?
The experiences of rare caregivers are largely hidden, especially in the Alexander Disease community. They often feel as if their story is overlooked or misunderstood. ANGEL AID is honored to provide an opportunity to build community with those who can relate. ‘Voice of the Raregivers™’ provided participants with a space to explore with others what it truly means to be the parent/caregiver of a child with Alexander Disease.
During a six-week facilitated group discussion with Dr. Chelsey Hague, participants were able to explore topics ranging from the diagnostic journey to caregiving, identity shifts and navigating the medical system, and identity shifts related to their child’s diagnosis.
Each workshop included live virtual group discussions after which a skilled illustrator created six graphics relating to participant experiences in parenting a child with a rare disease. These graphics focus on the context of what it is like to experience stress, uncertainty, anxiety, and fear while navigating the child’s rare disease. These insights will bring a ‘voice’ to these important topics and support future families, medical professionals, and others in the rare disease community to better understand the experience of parenting/caregiving for a child with Alexander Disease and to better meet the needs of families.
These discussions were informed by the Raregivers™ Emotional Journey Map, spearheaded by ANGEL AID in 2022, illustrating the cycle of hope and grief ~ six (6) well-documented stages that rare caregivers, patients and professionals may experience.
“My own life, is it still there? I’m trying to have it but it’s all about my son all the time. I cannot accept that this is the way his life will go. It’s like a puzzle. It changes the way I interact with other people. I am trying to give people a chance. I hope the doctors can join in and use these infographics to learn more about rare disease. I know they are busy but I hope.”
