Alexander Disease Group Discussion

Voice of the Raregivers™ – Alexander Community

Angel Aid are holding a six-week facilitated group discussion starting on 19th October to produce graphics to help bring a voice to parents’ experiences of raising a child with a rare disease. Please see information provided by them below:


Are you someone who is raising a child with #AlexanderDisease? Do you feel as if your experience is overlooked or misunderstood? We see you & we want to give you a voice. Join us at Angel Aid for the opportunity to build community with those who can relate.

For six weeks, we will explore topics ranging from the diagnostic journey to caregiving, identity shifts and navigating the medical system and identity shifts related to your child’s diagnosis. From these conversations and stories, the facilitator, Dr. Chelsey Hauge will graphically record the community’s experience, which you will have the opportunity to reflect on and discuss. Five graphics will be produced specific to your experience in parenting a child with Alexander Disease.

Your voice will support future families, medical professionals, and others in the rare disease community to better understand the experience of parenting a child with Alexander Disease and to better meet the needs of families. October 19th – November 12th, 2022 – Wednesday mornings 10am-11am PST (6pm-7pm in the UK)

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Alex - The Leukodystrophy Charity